Saturday, December 3, 2011

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. 

Wednesday, November 16, 2011

I'm still breathing.

For some reason as cancer patients, dates and specific times of the year during our illness are so incredibly important to us.  Looking back towards the day we were diagnosed, when our treatment started, when/if we hit our first remission, transplant dates.  This in turn spills into big life changes as well, when I left this job, when I started this grad school program, when I started that grad school program ;) When I moved from Florida... When I moved from Boston... When I moved back to Boston... When I moved home, to good old Doylestown Pennsylvania.

There are so many endings and beginnings in our journey and part of our moving forward process is grieving over the past, so we are allowed to enjoy the future.  This November, marks two incredibly brutal, life-changing, euphoric, challenging, progressive, loving and memorable years. Two Novembers ago at 87lbs I made the decision to leave Boston, my Grad Program, my life to come home and be cared for by the most amazing mothers in the world. I packed my bag, and left behind a life I dreamed of.  And in an instant I felt my future vanish, the rug pulled out from under me, and a life now lost.

Coming home signified that I was too sick. Too sick in fact to hardly shower, walk to the bathroom, or eat. Coming home meant treatment was not working, the disease was progressing, and an uncertainty of time, my time.  You can ask some of my best friends how deeply heartbreaking these months were for me, as they became heartbroken as well, thinking  they might need to schedule flights to come home and say their goodbyes. Their final goodbyes.

Two years, a life time ago, and a life lost somehow has been an entirely new life gained.  I can not tell you how this happened besides the caring and nurturing of friends, family, and an oncology team that never gave up on me. But, it did. Two years later and in a few short months I will be graduating from this grad program, I am not only able to walk, but run miles.  I not only shower, but I intern, celebrate life with friends, and eat, eat and eat.

We hold these dates so close to us, these months that symbolize pieces of our lives.  We tuck them away so delicately in our hearts that we know when the foliage changed two years ago, or five years ago, or ten years ago -- we remember where we were, and we stop to take in the moment now to see where we are.

As cancer patients these dates, times, months, memories are so important and vital to our identity and to our souls because they are the moments in which we changed.  They are the moments that molded us into the people we are today.  These were the moments we felt the purest pain and still begged to be here. And these are the moments that although we couldn't do much, we had to, no matter what: continue to breathe.

And for some of us,
those few lucky ones,
myself included.
We still are.

Five years ago, two years ago, and today so much has changed that I could never even justify it with  words.  But for all the change, evolution, moments and memories, one thing continues to hold true...

I'm still breathing.
(and you are too...)

And this November I can't think of anything I am more grateful for, than that.


Sending love, light and tons of good health to all of you,
Wishing you all the most wonderful Thanksgiving.
And here's to lots, and lots of breathing.

xox,
B.

Sunday, November 6, 2011

Texas Infusion 2011: Complete!

I finally received the much anticipated second round of texas infusions at the end of October and it was another complete success! Unfortunately due to my lovely partner having a stomach bug and some fevers, I took to Texas on my own -- and it went down without a hitch.

This is great news for the future because I was able to fly all the way down by myself without any big complications.  Although it's always nice to have a caregiver by your side, it's even more wonderful to know that if push comes to shove I need to do this on my own again, I am able.

Once again, this trip in no way shape or form would have been possible without lots of key players.  Big, HUGE thanks to my amazing brother and uncle for providing airfare for this round! And, huge huge thanks to those who donated other amounts that were able to get me to and from the airport, to the hospital, to the hotel, and back to the airport all in one piece -- while still being able to eat foods that I wanted :) Whether you donated 5 dollars or more, each penny that I received was used.  Those who donated a few days later after Texas will be used for future infusions.

That is, we HOPE there will be future infusions.  The GOOD news from this trip is we recently tested my ESR/SED rate levels and they are going DOWN.  ESR/SED rate measures the inflammation in our bodies -- in this case, it measure my cancer.  And in the past it's been indicative of what is happening with my disease.  From May, during my relapse til September my ESR has increased 10 points within every month.  This month?  It decreased ten points.  At the rate is located at a 43.  Not bad, not bad at all.

Therefore we think this vaccine might actually be working.  The game plan is to scan mid-December, and if it works? We continue to infuse every six weeks down in Texas.  That means all of my infusions for 2011 are complete! What a way to end a year -- one whole entire year without any toxic chemotherapy.  I could not ask for anything more.

A lot of lovely, wonderful, people have asked me lately how Texas was and how things are.  October was a very, very, busy, chaotic, jam-packed month.  And I have much to update but I wanted to just send a quick note that YES, my infusions are complete! I am feeling fabulous! I have recieved all of your donations! (which I will post a thank you to all the individuals this month, because I know some of you are concerned if your payments went through). And life is busy, but amazing in all aspects of my life.

It's been amazing feeling normal, celebrating with friends over things we should be celebrating about in our twenties -- such as one of my best friend's weddings that I attended this month.  I hope you're enjoying life as much as I am, and can not thank you all enough for contributing these last few months.  You all have opened your hearts and pockets to keep me healthy and happy and smiling wide!

And here are some pictures to prove it :)






















 Love and Light,

B!

Wednesday, October 19, 2011

Texas, Round One - Complete!

Round one in Texas was a complete success!  We were able to fly in and out within almost a twenty four hour period, thanks to our good friend Liz Masson who accommodated our airfare, and all of those other wonderful people who supplied us with enough money to handle the 120 dollar (yikes!) round trip cab fare from the airport to the hotel and other travel costs.

We have luckily booked one way toward Texas for our next round which is on October 26th due to my amazing brother who had an airline voucher, and are now holding out for Corporate Angels to find us a return flight.  I've received a lot of "I want to help, what do I do" kinda of emails lately.  For those who would like to help us out with our cab fare, food, hotel costs, parking, and other odds and ends, please look to your right of the screen where it has a DONATE button and above it says "Donations for Houston Treatment," click on the button, and you can donate (with a debit, credit card, or check) as low as 1 dollar, or whatever amount you wish!  Any money you decide to donate helps us along this last leg of our trip for this treatment.  And we so, so appreciate it.

I will definitely update more once the second infusion is complete, and can never thank all of you enough for your kindness.  Without all of you, this treatment, which we hope is truly working this time around! Would not be possible. I am forever grateful to all of you... and I will never be able to say it enough.

We hope you are taking in the beauty of Fall... it's been beautiful up here in Pennsylvania
And Lily and I are enjoying every minute of it!

Happy Fall my loves!





Photo Credit: Katie N. Ehrman at the Poconos

Love and Light,

B.

Monday, October 10, 2011

Treatment, Hotels, and Flights -- oh my!

In two days my amazing partner (Rich) and I will set course again for Houston, TX.  Since the relapse in May it has been decided that my cancer is not growing fast enough to throw in another toxic treatment (yay!).  Therefore, we are attempting the EBV+ vaccine again, and THIS time around I will be put on the relapse arm opposed to the remission arm in hopes that this arm will wreak more havoc on the cancer.

Attempting another treatment to Texas is exciting (another chance for this treatment to work) but a bit financially stressful.  Therefore I just wanted to thank everyone who has sent their positive vibes, opened their hearts, and have also opened their wallets for us to make this trip possible.  I am so humbled, grateful, and words can never express how appreciative I am for the kindness of so many individuals out there.

Originally we had hoped Corporate Angels which is a wonderful organization that flies cancer patients for free would be able to score us a flight.  However, they were unable to find a flight in the areas of our departure and arrivals in the days we need for treatment.  So, the wonderful and talented Ms. Liz Masson, generously offered her wonderful miles to me and Rich -- and we have our first flight booked!!


 Ms. Jola & Ms. Liz


We leave Wednesday (October 12th) for TX at dawn and leave Thursday (October 13th) at dawn so I am able to make my night shift on Thursday at my internship.  Orginially Rich and I wanted to fly in and out the same day; however, with this round of treatment and the obversvation period it is literally impossible for us to find a flight to arrive there and then late enough to leave to have all the tests, obversvation, ect, complete -- we would most likely miss our flight.

Therefore we had to make the decision to stay over Wednesday night, something we were not sure how we were financially going to be able to handle.  Luckily, some amazing and ridiculously generous people, in addition to Ms. Masson and her miles, donated money in the last two weeks and we will just have enough to stay at a hotel Wednesday, eat, and enough for cab fare.  I am so incredibly lucky for these people as they are making this trip possible.

So! Huge, huge thanks to: Ms. Judy Kilty, Ms. Alyson Weissman, Ms. Barbara Chambers, Ms. Katy Cooper, Mr. James Oheir, Ms. Alannah DiBona, Ms. Courtney Forsberg, Ms. Linda Davidson, Ms. Ruth Henry, Mr. Chris Carr, and Ms. Michelle McDonald.  Without all of you, and Ms. Masson, Rich and I would not  make this trip, nor would I receive this form of treatment.  I will be forever grateful for all of you and your hearts.

The last thing I absolutely hate to do on my blog is ask for any charity.  However, the trips to Texas this fall were very last minute as we didn't know when my cells would be ready.  With this first trip booked and ready to roll we are now attempting to figure out the second part of this treatment.  To complete this round Rich and I have to make our way down again on October 26th for the second infusion.

Therefore we are asking again: if there is ANYONE out there who has frequent flier miles that they would be willing to donate, or money towards the PayPal account for our next and final trip down to TX, we thank you in advance.  If you have left a comment on the blog that you'd like to donate (I believe there is a Cara out there who said she would like to), I am having trouble finding you! So please, email me at: RebekahFurey@mac.com to discuss any details.  Again, we thank all of you for sending positive vibes, opening your hearts, and your pockets.  My health and semi-normal life has continued because of each and every one of you.

Thank you again.
Sending Love and Light,

B.

Wednesday, September 21, 2011

One of the Lucky Ones

Life has been full of smiles as of late.  We've received notice from Texas that my second round of the EBV+ Trial with the arm for relapsed and refractory patients is ready for me!  I will be receiving the first infusion on October 12th and then my second the October 26th.  

So, a favor to any of you who are able: We are scrambling a bit financially in regards to the flights, as the infusions are coming up.  Ideally, we'd love to have my partner to go with me as I'll be flying in and out of TX in one day and the pre-meds cause a bit of whooziness.  But for now, we're looking for flights just from PHL to Houston, TX, just for me.  So although I hate to ask for any bit of charity, if you know of any charities, or anyone willing to use frequent flier miles to help out this cancer patient, let me know! If you'd like to chip in just a few dollars you can always donate to the paypal account listed on the screen. (If you would like to donate your miles in any way, on either date, for myself or my partner, please email me at: RebekahFurey@mac.com so we could possibly discuss details) We obviously would be forever in debt to anyone who could help us, and thank you in advance for just reading this small paragraph.  

But on to to the good stuff! My ESR/SED rate remains unchanged this week, it is holding in the 40's, and we are thrilled about that. My weight continues to fluctuate between 126-128lbs, I am hoping as I contiue to gain now it is due to muscle mass! :) And the last piece of wonderful news is that since the infusions in TX are ready to go, we will scan 8 weeks post the second infusion.  This means that I will receive a PET/CT scan sometime during December, which will be the longest period of time my body has ever had time off from a scan since 2006 (pretty cool if you ask me).  If I begin to have any symptoms, drop weight, or my ESR sky rockets we will move the scan date closer.  However, O'conner says there is no need for a check-up since Dr. Bollard down in TX will be seeing me, and we can follow the EBV trial protocol-schedule of scan dates.

All in all, this is wonderful, wonderful news.  I will have the entire semester off from toxic-treatment (unless anything pops up on the radar), and we are giving Texas a second go and hoping this arm of the trial will do some damage to those pesky cancer cells. In the midst of my last year of graduate school, new cancer treatments/vaccines, and just life in general I can easily say that I am honestly one of the lucky ones, and life could not be more sweet these days.  As always, I thank all of you for your comfort, support and love and I hope you're all enjoying the change of seasons and life as much as I am these days.

As always, sending each and every one of you tons and tons of love & light :)















xoxo,
B.

Friday, September 2, 2011

Celebration-Rollercoaster

Two weeks ago my lovely entourage and I (my mothers: Darlene and Diane, and my partner: Rich) took the trip to NYU for my PET/CT scan to determine if this EBV positive trial was/is working that I received down in Texas.

At the time of the scan a few hiccups occurred: 1) O'conner was out of the office  2) my veins refused to cooperate during the CT scan, and only a PET scan was given during this time.  Therefore, we were a bit unsure about the results.  When I looked over the scan there was progression, but very minimial, and we only had the PET scan to go off of for information -- never a good thing for a refractory hodger, especially since this EBV trial is known to cause inflammation due to the killer T-cells that attack my tumors.

So, for two weeks my oncologist teams (O'conner, Zain, Bollard) discussed what should be done.  Yesterday, my entourage and I met up again, with O'conner returning from his travels and all doctors giving their two cents.  I was prepared to start Revlamid, or hop back on a previous treatment (SAHA) due to the fact that there was progression; however, my team had a different thought process.

O'conner's team is one of my favorites because they always see their refractory patients in the BIG PICTURE.  They take into account how the patient is feeling, their symptoms, their blood counts, and then the numbers on the pages of scans.  In three out of four areas I was excelling beyond all expectations.  My blood counts are the highest they've been in five years. I haven't held onto weight like this since before my diagnosis, and I feel on TOP of the world these days with energy.  And when you see me in person, there is no denying that -- and O'conners team has been sitting court-side.

So, after a quick run down we all decided that the best thing to do would be to milk this oh-so-good-feeling, out for as long as humanely possible.  On top of that, we really haven't given the EBV+ vaccine the best shot in the world, and we are looking to possibly do a second infusion in the next two months (if my next round is ready down in Texas).  Therefore, the conclusion is to wait and not receive any toxic treatment.

After the news two weeks ago, I feel as though these last scans from relapse to this recent visit has been an incredible rollercoaster of the unknown.  Is there disease? Is there not? Is that inflammation? Is the treatment working? Wait, if we have progression, why aren't you treating it? Without a CT, is that really progression? There are so many questions, and a lot of people take time and energy analyzing all of it, but this is where I get to step back and let all of those questions fall by the way side.  Sometimes, we don't need all of the answers.  Sometimes, it's okay to enjoy the unknown if we feel good.  And that is what I plan to do.

If you are going to tell a Refractory Hodger that they do not need to receive treatment for 2-3 more months, THAT is a celebration, whether there are 5 questions or 500, the conclusion is the same.  We will wait, I will enjoy this time without treatment, and we celebrate in the fact that I have almost a whole semester without having to worry about treatment.  It is something to cherish.

It has taken time and experience to enjoy these periods without anxiety ridden thoughts.  As others may have anxiety over: is the disease is growing or not, or question if a day of fatigue is because of cancer or just because it is too much.  But here, in our neck of the woods you will find me and my lovely entourage basking in the glory of this 'wait and watch period' without treatment, and enjoying every single moment of these non-treatment days... for as long as we can.




From now till november we will track my ESR levels, and meet with O'conner in two more months as a check-in to reassess.  But in the mean time -- we celebrate!

Love and light to all of you my loves,

B!

Friday, August 19, 2011

And so it goes...

...life is easier on me, most of the time.

As always, I so appreciate the positive vibes and energy you all send my way during scan time.  I completely believe in those healing vibes and since I'm feeling so wonderful physically, I know that my body IS in fact receiving them.

Although my blood counts, weight, and body show zero signs of symptoms or cancer related issues --  the scan did not show what we had hoped.  There is definite progression of nodes, a few new nodes, ranging from 1-3cm's and SUV's between 7-9.  Nothing to be too worried about, but nothing to celebrate either.

Our next steps are to have Dr. O, Dr. Zain (NYC) and Dr. Bollard (Houston) discuss if this is too much progession to attempt a different arm of the EBV+ vaccine down in Texas.  We won't know for sure what the next steps will be for another week; however, we have a plan A, B and C as always.

Although I'm back in the ring, I have all the confidence in the world through my oncology teams, my family, my partner and I that this will only be another small bump in the road and life will continue on to be semi-normal as I approach my last year of Grad School, and finish off my long awaited internships.

Will update when I have more information and a plan is in place.
Sending all of you love and light, as always.
And remember to hug the ones you love today, and everyday.



xoxo,
B!

Saturday, August 13, 2011

Inside the mind

If you sat down with one hundred cancer patients I can garentee you they would all agree with a similar emotion when it comes to the days approaching a PET/CT scan...

we feel crazy.

In truth, the days or sometimes even weeks before scan time can create the most anxiety-ridden, insane thought process of even the most logical and rational individuals out there.  Although I find myself fairly well-balanced emotionally, I am no different from those who jump off the deep end and belly flop into the insanity pool, sometimes even taking observers with me. 

Whether you live in three month incremental scans, as I do, or once a year the emotions and turmoil that occur inside the mind of a cancer patient can be difficult to understand.  A reason, I felt the need to write this post.  Although I can not speak on behalf of all cancer patients, I can tell you that the days before and after a scan are my most unstable and inconsistent in my mind, soul, and identity.  In turn, these are the things that happen:

1) Thinkers (such as myself) tend to over-analyze during these days.  I find myself not only thinking of what the scan may reveal but how A) my family will react, B) my partner will react C) my friends will react and D) how my school/work enviornment will react.  I  take it a step further but think of the outcomes -- if it is a good scan: how will I feel (where major survivors guilt comes into play) if it is a poor scan: what are my options?  I think about the latest research, what friend of mine is on what trial and is it available on the east coast, where I will fit in different treatments, and what toxicity level am I willing to endure this time around.  I also contemplate: how should I spin this story so everyone will feel okay with my results and be confident that I will be fine?  Without even knowing the results my brain will go into a tail spin and all confidence of a semi-normal life and a future appears it can be ripped away with in an instant, and the stable rug I have been standing on the last six months will be taken out from under me.  It is mentally exhausting and emotionally draining and it's hard.  But these are things that I need to think about to prepare for what is to come.

2) Putting up walls.  During the week before and after scans I tend to emotionally isolate myself (and others) for protection.  For many reasons.  Reasons due to not wanting to answer how I feel or what I think the scan will be -- because especially during this week, I have no clue.  Questions regarding what my next steps will be (because without knowing how big or small the cancer is, I can't tell you yet).  Protection from normalcy.  During scan time is the week before or after that I truly recognize I am not a normal twenty-seven year old, when placed in a normal scene at a bar, party, or even just having coffee with friends I compare -- and it is awful.  I think of how different my life is and although I attempt with all my might not to throw a small pity party, I recognize that here I am after five years of treatment, mentally hoping that I do not have to receive more toxic chemo.  Because, although I can accept this life and live it well, and although it all makes me stronger, it would be nice not to have toxic drugs flow through my veins for the rest of my life.  Therefore, walls go up.

In addition, I try to pull myself away from social situations and want to reflect and probably become a bit too introspective.  Promised phone calls and social dates are usually canceled last minute with lots of apologies later, and I tend to crawl into my safe shell for a matter of days.  But, those that come near me, or push too hard emotionally the week before or after (which are usually the ones I care for the most) are the ones that tend to crack this shell and watch frustration, sadness or disappointment pour out of me.  I attempt to keep these walls up for a reason, I am vulnerable, I am a bit crazy, and still waters run very deep during this time.  To be pushed or prodded, even if it is something unrelated to cancer can result in destruction.  With most individuals, we tend to act out or (unintentionally) hurt those we love the most because we feel safe with them.  We can yell, scream, and lash out because we know they are loyal, loving, family and friends that get it.  But, it still does not make it better, easier, or acceptable.  I am well-known for these moments during close proximity to my scans, and I always feel terrible at the end of these two or three weeks when all is said and done, so therefore, walls are needed.  No matter how much friends and family say 'it is okay... to break down, or let go...' it is never easy, and along with the emotional drain from my own experiences I tend to feel guilty for expresssing myself in an inappropriate way afterward.  Unfortunately, it is not healthy for either party -- but sometimes, you do what you have to do to get through, you do the best you can do and sometimes that has to be enough.  I am lucky that those around me understand this dynamic, and hope if you are a caregiver you understand that sometimes this is how cancer warriors tend to think, this is how we survive.

3) Lastly and most importantly is that vulnerability is a huge component during scan-time. During these days of introspection the things I think about the most are my relationships.  I carefully go through mental photographs in my mind of my best friends, my partner, my past relationships, family and how much I care for each of them.  I find myself during these days thinking of specific people who are close to me that I could not imagine living without, in the car driving, or cooking, and all of a sudden as if a small emotional button was softly pushed tears of love will come pouring out.  I find myself listening to a certain song on a long drive and thinking about an individual: have I told them I love them this week? What could I send them in the mail? I wish I could show them how much I deeply and truly care for them without them thinking "There goes Bekah again...  being deep again... " Scan time is a horrible mix of vulnerability and protection, thoughts of what more I can do in my relationships and friendships circulate, and just like a carousel I end up going around, jumping from one person to another in my mind hoping they know how much they mean to me, and how grateful I am to have them in my life, and how amazing I think they are as an individual.  And, at the end of most days I am so overwhelmed not only by my thoughts but the knowledge that I am surrounded by so much love that I always think: how the hell did I get so lucky? 

[Annual Furey-Cousin Beach Photo]

Because I am -- so incredibly lucky for those who choose to be in my life.

As you can see all of these conflicting, raw, and vulnerable thoughts can continue on for days or even weeks at a time depending on who you speak to.  I am fortunate that I have narrowed these moments down to a week before and after my scans; but, none of this is easy.   I would never wish anyone to understand these days -- because to do that you would have to experience cancer yourself; however, I hope these words at least offer some guidance and insight inside the mind of other warriors and  myself.

In turn, it is during these days (leading up to my scan this Thursday the 18th) that I want to thank those who support, comfort, and allow me to be crazy, knowing that I will resurface to normalcy soon.  It is because of these individuals who see my tears of pain that coincidentally also cause tears of gratitude during my long drives on summer afternoons in the days leading up to that inevitable scan.

Love and Light,
B.

Thursday, August 4, 2011

Life-force

I began this summer semester in a remission, with one of my courses being Bereavement Counseling.  I am conditioned and familiar with clients who are alive, understanding and trying to comprehend the complexity and dynamics these individuals have with remaining, alive, family members, friends, and peers.  However, I wanted to delve deeper into the souls of survivors of lost ones.  I also, selfishly, knew this was a course I needed for myself.  I was ready to approach death (while being in remission), and as I see more of my friends pass away, I wanted to understand from every single lens how to make this better, easier, for the survivors of people who've passed.

But the cold hard truth is -- nothing makes death, or loss, easier or better. I could write you pages upon pages of how grateful we all are about life, and every beautiful individual that I have lost, or others have seen pass, but loss is loss.  It is hard, painful, heartbreaking, and unjust for most in the cancer world.  And to put it bluntly, I hate it. Every single warrior that passes, chips away a part of my soul and creates a huge hole for those family members missing that innocent warrior who has fought tooth and nail for their life. 

But what I can also tell you?  The individuals who have passed that I've experienced are more graceful, beautiful, and stunning than you or I could ever be.  There are days, when I think about Anne (who passed a way a little over a month ago) or Kirsten, Adrienne and Eric who in their moments of accepting death were still able to shine such a bright light onto others lives.  They, in my mind were a culmination of a life force: a beautiful mess of calm, peace, and loss.

Anne

In the last month, the Refractory Hodgkin's community has lost Anne, and as of very recent, Andy.  I have words, lots of words, but nothing I write in these circumstances ever seems to justify how I feel, or the pain that streams through the bodies of those living with a missing piece of their heart day in and day out.  So I wanted to share something with you to at least give pause to these two magnificent individuals

Kimberly, Calvin, Andy, Oliva

About two months or so before Anne passed away I sent her my favorite book Meditations from the Mat. The book encompasses daily reflections of life, meditations, the path of Yoga and Life.  Yet again, as days, life, and beautiful individuals pass by, I come to these thoughts that I shared with Anne during her last months.  The emails after our book exchange breathed life into me more during those weeks than at any other time this year, and in these moments I told her, she was in fact the light of the world.  Knowing that she and others who have passed encompass(ed) this passage each day they were here, and continue to do so through their energy and through their families.  It is all about choice, and how we day after day choose to react to what is in front of us.  Something, those we've lost have accomplished with the most grace I've ever seen and continue to see...

My favorite part of these time worn pages  is that I write down an individuals name that reminds me of the concept, theory, voice, or energy of that passage.  And this is where, when you turn the pages to Day 271, you will see Anne in big, bold letters.

Day 271
"Each one of us is merely a small instrument. When you look at the inner workings of electrical things, often you see small and big wires, new and old, cheap and expensive, lined up. Until the current passes through them, there will be no light. That wire is you and me. The current is a higher energy. We have the power to let the current pass through us, use us, produce the light of the world. Or we can refuse to be used and allow darkness to spread" - Mother Teresa

Walking along a beach, I watched hundreds of little crabs digging tunnels into the sand. Each crab tunnel was the equivalent of my digging a tunnel twenty feet deep with my bare hands in thirty or forty seconds. This commonplace miracle was possible because it was necessary. If crabs are going to get by in this world, they are going to have to possess that much strength, that much life-force -- and so they have it. Life force is like that -- ubiquitous and inexhaustible. Nothing is impossible for those who have it. The root of the word pranayama is prana, or life force. What we call a miracle is often imply the presence of a little extra prana. 

Prana does not differentiate between good and bad; we do. Prana simply is. It infuses the mouse with the ability to run, and it infuses the hawk with the ability to fly swiftly. It is up to each of us to make proper use of the prana available to us. Most of us have been unconsciously minimizing the amount of prana we channel into our lives because we are afraid of what we might do with all that life force if we had it. This is why surrendering to goodness is so important. Once we surrender, we can get on with the business of being magnificent, trusting that we will be guided by a higher power along the way. As we practice pranayama, we are learning to open up our energy channels. We're saying we are ready to be the 'light of the world.'  



To Anne, and her amazing, joyous family, I continue to send you all love, and think of Anne every single day that goes by. To Andy, Kimberly, Calvin, and Olivia, I send you strength, comfort, and love during these difficult days.

We all, the HL community, and others hold Anne and Andy in our hearts.
To these families, and you, today I wish you a little extra Prana in your days and days to follow.

Love and Light,
B.