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!

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.

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.

Shedding of Skin

Post inspired by the following:

When you are caught in the cross fire of a chronic or terminal illness you are challenged by various relationship obstacles from family members, to best friends, old loves, and new partnerships.  If you are surviving through a shorter term treatment of a year or two, I believe, as many should most hold everyone as close to their heart as possible, as we watch a few too many walk into the distance, mouthing the words "I can't do this," as we see their silhouette disappear.

Loss in general is a major theme in the world of the ill.  And when you are like me, someone who has dealt with a deep-rooted family-loss at a young age, a loss of a parent and that parent's role.  It almost feels as if every single loss in our lives is a bit more devastating than it should be.  And as you (or I have been) reminiscing over past relationships, ones that have left you or that you have chosen to leave, you realize this is a central part of life.  Things end.  Love, friendship, occupations, life...

However, what I see most cancer patients do? And I realize only now, that I am guilty of as well. Is that we fear loss so much between our own mortality, loss of our future (jobs, loves, and life), that we tend to hold on to those in our lives who have decided to be present, but alas, might not be the most healthiest of people to surround ourselves with.  We hold everyone close because we know so many walk away during the darker days. We hold the ones that put in just a tid-bit of energy, or because they have an important title, or because "we should, they stuck around for a, b, and c...'' We have these running excuses, we have reasons, and we keep them close -- even if these individuals hurt us, pull negative energy towards us, or take advantage of us in some way.  We hold them close, because a small part of us see that they have not walked the other way because of the cancer. 

My question over this last year however has been: Should we? Should we keep individuals close to us that have not overtly walked away that haven't directly and maliciously hurt us; however, they may not add the most positive energy to our lives?  Should we keep individuals in our circle of family and friends because we "should," and that it is "the right thing to do?" Should we let them fall by the wayside?

This has been a very personal question in my own heart, and an internal conflict that has been battling a bit within my soul for the pure reason that: I fear loss, as most of us do.  Sometimes as cancer patients we believe that we don't deserve the best, that by some unfair means because we are sick we should settle or appreciate anyone who gives us recognition or support, that we should 'take it,' in some way, because we have experienced so many people running for the hills in the opposite direction.  But to me, settling, accepting an unbalanced, unfair, or just unnurturing relationship is not good enough anymore.  We, the sick, are not any less because we have a disease growing within us.  And therefore, we deserve as much as the next person (if not more!)

It has taken a lot of time, thought, and acceptance within my heart to get to this point.  But I do believe, loss, is imperative on this path.  And not just the kind of loss that other people choose, loss that we control as well.  We are allowed to step away, we are allowed to make room for new people, friends, connections, love, and relationships... we deserve to do this for ourselves, because we still bleed the same blood as the next man or woman next to us.

And in the end, as much as it pains us or provokes guilt from our honest hearts.  We not only deserve to shed those in our lives who have negative impacts, but we must.  I realized now, as I begin to leave negative energy behind...new, bright, and lively positive energy surfaces in my life.  So, we must.  We must shed anything and anyone who causes pain within us.  If we don't there will not be enough room for the ones we truly deserve.

If we don't there will not be room enough for the ones that truly deserve us.

Check, Check & Double Check.

Houston infusions/EBV positive vaccine: Check
Last summer class this week: Check
Freckles!: Check :)
Sun kissed in all the right spots, and enjoying Kayaking, Hiking and Beaching this summer: Check
Enjoying life before the dreaded scan on August 18th to see what is happening inside my body: Check

Lots of smiles: double check!

Most likely I will come in and update a bit before PET/CT scan date from all the travels that happened over the last month, as well as the loss of our beloved Anne, and other fellow refractory kids that need our support. Although things have been a bit shaky with the Texas Trial, I've been sending out about 15 tubes of blood down to TX since the infusions for them to track markers, and considering -- I'm still feeling pretty damn good :) Luckily, I'll only have to do this for a few more weeks.

For now, I'm off to finish my final paper of the summer semester -- and then bask in the glory of 'summer' until I begin interning in Mid-August.

Happy Summer :)

B!

And just like dust, I rise.

There have been various reactions to the recent news of relapse, and I just wanted to write a bit before I head down to Texas to receive my EBV + Vaccine through Baylor College of Medicine in Houston.

(EBV+ Vaccine: on ClinicalTrials.gov: click here)

To be honest, after returning from friends in CT after Memorial Day weekend, I was in a definite 'funk' from receiving the news, letting it set in, and digesting it.  I don't want any other cancer warrior to think I am bubbly and optimistic twenty four seven even after receiving such disappointing news.  There is a huge difference between being 'happy' and being 'grateful.'  The gratefulness piece is always in me. Always.  However, it was tough to get out of bed the last few days and to look at the bright side of things when the reality that more treatment (if this vaccine doesn't do the job) will continue in the future.  I think it's important for those that are ill or receive hard news, that we are still gentle with ourselves.  In the beginning I used to repress these feelings and ignore them, realizing they would only come out later to bite me in the butt.  Now, if I feel down for a few days, I let myself.  Usually after a week or two, I find myself back on my feet again and moving.  I am no superwoman -- none of us are, so I believe its truly important to let yourself 'be' in these types of situations. 

Next, there have been a lot -- and I mean A LOT of people who are deeply disappointed and upset.  I do appreciate all of your words of support, emails, comments, phone calls and texts.  I still believe one of the main reasons I am still here is my network of close-knit family and friends and even strangers that shower me with kindess and love every opportunity that I'm in need.  But I want to assure you, that there are a lot of things we should be grateful for after receiving this news. 

So, beings another grateful list for you to view :)

• I feel incredible.  Emotionally, this is a huge hit.  But physically, I have NEVER in the last five years felt that I have so much energy, muscle, weight, and amazing health other than the cancer.  Everything else in my body is working like clock work, my counts are great -- basically normal, and this is something to be thankful for in all realms because if I need to face another four years of treatment or more again, I feel ready, physically. 

• I have not received any treatment since November.  Although I am heading down to Texas, this form of treatment is a vaccine, I am receiving back my own blood with a vaccine in it.  This is not chemotherapy, radiation, or anything toxic.  Most likely, since my next scan will be in September, I will not receive any further toxic treatment till October or even November.  This means I have just gone through one solid year without any form of treatment, a milestone if you asked me last year I never thought I would be able to accomplish or experience.  Having a solid year of 'nothing,' has strengthened my endurance, stamina, drive, body, and mind.  I am grateful for this year.  I am grateful for the break I had, as more clinical trials have opened as well.

• I have accomplished more in these last six months, then I'd say most would have :) I traveled with my three dear friends and brother to the most gorgeous place in the world -- Greece! And had the time of my life, I overloaded last semester and finished all of my coursework for this degree, transferred all of my classes and finished up incompletes from Lesley U, and now... once August hits, will just be able to focus on my clinical hours.  I have found a best friend in a man who is ridiculously supportive of me, this illness, and my family.  And I cherish every day I get to spend with him.  I have traveled more to visit friends than ever before these last few months, and am enjoy my first summer without chemotherapy since I was twenty one :) I have formed new friendships at my new University and re-nurtured and reunited with old ones in Boston. 

• I have very, very small disease.  And this trial in Texas has shown wonderful, if not the best results I've seen in a trial that I've participated in so far.  We are hopeful. We are hopeful.  I am still, very hopeful.  

• The remission. I achieved a remission: something none of us thought was possible.  Knowing that it can and did happen makes room for this possibility in the future with the right combination of drugs.  Remember: This disease is manageable.  Warriors such as Adrienne, Zach, and Mike have done/did it for more than ten years.  I'm barely coming up on five :)

• I look and FEEL healthy! 

 In all other areas of my life, things are going swimmingly.  So for now.  We focus on these positive factors.  We, I am grateful for all of these things (especially this good-looking, brain-ack family of my mine!)

In other news, I wanted to shift the focus to those in the trenches at the moment.  As they definitely need more of your positive waves of support and love than I do. 

• Anne, it seems is facing her last two-three weeks of life.  She has gracefully touched all of us in a way of speaking of death and dying that no one in my life has.  Her acceptance, and even her wit has survived despite her body deteriorating over the last few months.  Please keep her family in your thoughts.
• Andy, has ventured into Hospice.  And with (mother) Kim and their two kids balancing their lives, and this illness, I can not even imagine how difficult things must be for them during these summer months.  Please send love to the Keely's.  
• Mike, just as I have relapsed after Treanda (Bendamustine) has found out that his cancer has returned as well.  Mike and April now need to make difficult treatment decisions that compromises different aspects of Mike's quality of life and body.  These choices are never easy, please send them waves of comfort as they make these difficult decisions for their entire family.
• Karin is gearing up (after four attempts) into her allo transplant in NYC.  Karin and Craig have been awaiting this day for many months, we cheer and send large waves of hope and optimism that this form of treatment is successful! And that this couple survives a summer in the city! 

I send my love to all of you struggling, fighting, overcoming, in the trenches, surviving, pursuing life or treatment, and know I think of all of you, very often -- and lots that are not listed here.  Please remember to hug the ones you love, very tightly today.  And to attempt to see the gratefulness in your life, your loves, and yourself. 

I leave for Texas June 17th, receive my first infusion on the 18th.
My second infusion will be July 1st.  We scan eight-weeks, post second infusion (Mid-August).


Love & Light,
B.

Relapse.

I write this with bittersweet tears, as I know all of you have cheered with me these last six months that I've held a remission. I received a Pet/CT for a six-month post remission scan on Thursday, and the news revealed shows two new nodes of 2cm with a SUV of 10-13. My disease is one sneaky sucker, and most of us were a bit shocked with this news: the caner is officially back, and relapse has occurred.

I have gained all my weight (and continue) and am at 135 (over my normal weight) no symptoms, nothing. Normally I am very in-tune with my results. However, with the disease very small and not spreading like wild-fire it might just be because its just beginning to grow back again.

My team, family, my partner and I were a bit caught off guard as I walked into that scan overly confident that my remission held. I haven't felt this good in years; however, I also haven't been so happy in my professional or personal life as I am now so that could contribute to this.

But all of this, every moment of it is bittersweet. Am I upset that this relapsed occurred? Absolutely. There were snapshots and flashes of the future that were in my head since the first words of remission -- and not that all of those are now thrown out the window. They're more or less put on a bit of pause, or viewed with caution. The bittersweetness is surrounding my entire family, loved ones, and friends. We are absolutely extatic that I acheived remission for six entire months. This: A) Gives us hope for the future B) Allowed me to gain my weight, strength (both mental and physical) back to where I was years ago. and C) Gave us six months of non-cancer festivities, such as me beginning an amazing relationship with a ridiculously supportive man, my brother and sisters graduations from college, finishing up all of my grad school course work, and just life in general. I have sucked the most marrow I could out of every day, and I don't regret anything from it.

So now -- this is me, signing back on -- we are back. (Feels like I'm signing back on to a radio/tv show, :) ). Another aspect of this relapse is the fact that my partner, came with me to receive this news -- with both of us preparing for another three months of remission. With the sudden hit, (and him with zero experience in the cancer world), he supported me beyond my expectations, communicating with my family and friends after the news, talking to my doctors, fetching food, drinks, and anything I needed, and then pushing me to go to CT for the holiday weekend to visit all of my college friends, as planned. With a confirming "we are now in this together," I couldn't (oddly enough) have asked for a better response or relapse now that this has occurred.

On top of speaking of a 'good time to relapse' Whether I was in remission or not, I was set to receive my EBV+ trial vaccine on June 17th and July 1st (that Marsha has been in! and others are not moving towards), in Houston. The timing could not be better, as we had this set up and nothing in my treatment plan has changed. So life, continues to be normal, and I continue to build my strength so I can battle it out when/if those heavy chemo's must reenter my life again.

Truth be told, I am shaken, and disappointed. I had visions of moving further away from home when I graduate next spring, visions of someday being a mom again (since my menstrual cycle is temporarily back) and visions of a healthy life again... however, I am extremely, extremely grateful and feel privildged to have had these six months as I know so many other refractory kids never have that opportunity -- it does not go unnoticed that so many of us go for years and years on treatment with hardly any break. Or those, such as Anne or Andy (who are now on hospice), or Chris and Zach (who have just recently changed their treatment again) are out there in the trenches every day. I see them, I see all of us, no matter what, and I hope it does not come off in this post that I am kevetching ;) in any way. I am grateful, for these moments. And I wish for all of us (in this refractory group) that they existed more frequently.

For now we focus on: me feeling physically well, and many options for the future...

I will definitely be updating information and anything else I can to contribute to Houston trial for those who would like more information, as it is definitely another avenue/option that many people who are positive are going towards, and many of Dr. O's patients are starting to be tested for as well.


Love & Light,
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.

Hearts are breaking around the world for Anne

 Hearts are breaking around the world for Anne and her family...

What can I tell you about one of the most striking, gorgeous, vivacious women I know? That she not only tells the world how it is, but shifts her mind with whatever comes her way of acceptance and peace.  That when I've given her my opinion which most people just say 'Of course Bekah, you're right.' She comes right back at me and challenges my point, my reasoning, my beliefs.  She is one of the sweetest souls I have ever been in contact with. Her spunk, tenacity, and intellect blow my mind and with every single obstacle and devestation with this disease.  And with every hit that she and her family has experienced she has been able to view it in the light it is, but still appreciate the small, little things in life on a day to day basis.

To say she can rock the short hair, would be an understatement and I could only dream of having her fashion sense and desire to read about as much Buddhism, meditation, and yogi lifestyles as she does.  Pscyhologically she challenges me, as she has an even stronger sense of heart for Psychology and Education and KIDS.

The world, in general need more people like Anne.  Her mindset, her love and devotion to her family and friends, her acceptance of the world and the indivduals around her.  She makes me a better person by just our email exchanges. 

Anne, unfortunately underwent an allo-transplant and the results are not what she or any of us hoped it would be.  In addition, she is suffering from painful and advanced GVHD (graft verse host disease).To say that the results of her allo-transplant recently are unfair would be a drastic understatement, and hearts are breaking all around the world for what this horrific, painful, devestating disease does to some of the most amazing people who have graced this earth.

Although I do not want to be filled with anger -- I am.  But, what I ask you to please, please do is to go visit Anne's Caringbidge Site and sign her guest book.  I know she could use some peaceful and comforting vibes of strength and acceptance during this difficult time.


Love you, my beautiful girl.


Please remember to hug the ones you love today.


B.

It's nice to laugh again.

It's nice to laugh again.

It's so, so, nice to laugh again. That's all I keep thinking about these last few weeks. That, I've always enjoyed life, sucked the marrow out of everyday, and experienced such extremes of beauty and pain; however, as much as I enjoy[ed] life I have always been a somewhat serious, intense, person who loves to mull over philosophy, literature, social justice, and activism in any shape or form.

So, in the midst of these last few years and my core values I haven't laughed.  I mean, of course I've laughed but there is a huge difference between a laugh and huge, big-hearted, face-hurting, whole-body shaking kind of laugh.  And as of recent, it's been happening everyday.  I feel blessed and grateful that there are a few people in my life who have brought such humor and smiles into my world, that I laugh hysterically almost every day now.  It is a breath of sunshine that I have been craving for years.  And I have it.

And for that, I am so grateful. 

I struggle with talking about personal, personal things on here; however, a part of me feels sometimes my vulnerability lends itself to comforting others.  So, again, here I am, jumping -- knowing the risk of what I write could be a little bit too much exposed of my heart.  But, for now, I believe it's necessary.

I have been fortunate enough to have wonderful men in my life the last few years.  Rocks, men, who romantically and friendship and family wise who have stood near me.  From my Uncle Jay who would would and did in some ways, move mountains for me for me to live in a happy, healthy, healing environment, to my brother, Jacob who is one of the few people in my family who can just sit with me and 'be,' during the darker days.  And understand that it's okay... to not ask questions or push or prod on my emotions.  To John, my rock, my heart, who has witnessed my illnesses from the time we were babes and met when we were sixteen to now.  To one of my deepest loves, Darrel. Who paved the way for me through his stem cell transplant, and battled the last four years with me through our highs and lows on every level, in every degree, in every form and showed me how to love in a way I didn't think was possible.  To now, Richard, the man who makes me laugh my days away, accepts me, and has shown me that it is okay to let others care for me, spoil me rotten, and allow others to take the lead -- and it doesn't mean that I am lesser or weaker, it only means that I deserve to be treated in the way I treat others, and to be genuinely and selflessly cared for.

When you are faced with a chronic illness such as cancer many people believe (and I was shamefully one of them) that no one could every love you with this disease.  The uncertainty, the unknown, the pain, the side effects, the treatments, the traveling, the stress, the tension, the fatigue, the lack of energy, the dark days.  Who would voluntarily want to be part of something so intensely sad, unless they were there before the diagnosis?

I remember speaking to Adrienne about this.  A was always so confident about the fact that there would be men out there who could love us despite this disease.  She believed in humanity and was more confident in the male species than I was.  She believed there were men out there who had big, big hearts, sensitive souls, and the maturity to accept us (all of us).   That even though we were in our twenties, there would be someone who would see this disease as a strength, as a true testament to our character, wisdom, and drive towards our goals and life.  They would see that in us.  But I was always very skeptical.  To me if a man did not experience this first hand -- why would they want to be with someone with this much risk? How would I react if the situation were reversed? What does society tell us to do if we had a choice between a healthy woman or one filled with illness? (Run for the hills! of of course).  Would a man stay with me out of pity if things got too tough? Would I be able to keep up emotionally in a healthy relationship while taking care of myself physically? How would I give back if I'm battling a life-threatening disease?  Was it immature to think that I still want the same things, and crave the same things as my friends (a partner, kids, a life... for the future?) Was I insane to want this? Was I crazy, even during some of my darkest days during treatment thinking: I still want to find that counterpart in my life, a best friend to share my life with? 

With this disease comes difficult and challenging questions and we are all trying to find our way as gracefully as possible.  But all of us, whether we are healthy or not have these questions.  They are just more enhanced when you have this disease.  And it becomes more and more clear who you connect with, who you do not, who you want to invest your time into, and who you do not.  And to me lately, I have had a lot of clarity.  When before I thought I might be a little crazy... I can tell you in this moment, in this very moment these are understandable and healthy questions.  And, no I was not crazy nor insane.  I was and am normal -- and Adrienne was absolutely right (she usually was).

At this point I am only twenty seven; but, I have many more years to go... and although I have and have had wonderful men in my life who knows what the future holds for me or anyone.  What I do know is -- We deserve this.  The refractory kids, those with chronic illnesses, those with ANY illness, should not settle for anything less of what they really want in life.  No one chooses our illnesses.  We get dealt a hand of cards and we choose how to play them. So play them with the philosophy that we are deserving, we are allowed to want, crave, and desire, we are allowed to want more out of life and our futures. 

I strongly feel that young women who are dealing with this illness, whether you are hesitant to let someone in due to the fact that you had cancer, are in the midst of treatment, or are someone who has the experience of a chronic-life-long disease -- if you feel ready, and it is something you want: let them in. We all deserve happiness. We all deserve to experience compassion, laughter, love, friendship, empathy, and happiness.  It is our choice if we want to settle -- or to let go.

For me, I can safely say for this moment in time... I am so glad that I let these people into my life.  Life always comes down to choices.  And although I have no idea what the future holds, for today, for this moment, in this minute in time I am making choices.  And for me, I choose laughter.  I choose laughing with my entire body. I choose laughing my days away. I choose wanting more, always.

I choose to let go. 

I hope you allow yourself these same choices. 
Because, whether we are healthy or ill, we each deserve them.

Love & Light,
B!

In love, with life.

I miss all of you dearly, and although I do not have time to update about all the new happenings in my life -- which I promise to do very soon (most likely the first two weeks of April, so check back!).

I can tell you that I am completely fulfilled in the following areas of my life:

• Success in school (ALL of my Lesley classes were transferred in! only three more electives to go, plus internship: graduation date set for May'12)
• Beautiful friends (Spring Break with my Dtown Girls and a visit with Chris! Travels to New England to visit with my Boston Loves)
• Health (stable weight at 125 lbs. and counts, smiling everyday)
• A New Love (I am grateful and fortunate to connect with someone who understands me, accepts this disease, and I has easily become one of my best friends)
• Me (I haven't been this happy in years... and am planning lots of travels this summer!)

As of recent, all of my senses are heightened in my life.  Food tastes more rich and sweet, my scent is slowly coming back and I'm able to smell the coffee grinds when I enter starbucks again (my heaven), colors and the sun shines more brilliant, and I listen to music in a completely different way now.. and take all of it in slowly, and savor each note.

Life is truly beautiful these days.  And with that, I will leave you with one of my favorites that I am seeing this weekend...  Ms. Ingrid Michaelson :)

Happy Spring!




Love & Light!
B.

Surreal Sweetness

So the scans revealed a complete...

Somehow, it happened. It's surreal, I haven't actually digested it yet.
But, somehow my scans continue to be clean.
This will be my first birthday since I was twenty one (turning twenty seven in two weeks)
that I will be cancer free.
Life is amazing.

And who do I have to appreciate and thank for all of the years of support
that lead to this wonderful news? yeah, that would be....

 

You!

Thank you all for believing in me,
even when there were moments that I did not believe in myself
or that this could ever in a million years be a reality.

Sending love and tons of light!

B

As the week unfolds...

As the week unfolds I will be heading to New York City for my lovely PET/CT Scan.  It's hard to believe it's been three months since I was declared cancer free, time certainly does fly when you are healthy.

We obviously hope that remission continues, if it does not though -- we do have a plan of attack as always. This week, I hold some of Kirsten's poetic words, close to my heart as I head in for testing and am hopeful for good results.

Kirsten's words:

I am

I am writing to you now from this place of strength. From this place of heart-thumping, heart-held tenacity. I am writing to you now to remind you of the spirit that lives and breathes, rises and falls, deep within and beyond these walls of the body. That lives out there, amongst the woodland owls, the ancient oaks, the cherry blossom petals that dance as if ballerinas poised in a slow curtsy to the ground. I am writing to you now so, should you need me in the future, at a time when struggle overtakes you, to say this: You are the owls, the oak, the cherry blossoms. You always were and you always will be, no matter the body that holds you now.

Sending love and light,
B

There are no words..

The entire Hodgkin's community (especially the refractory club) and I are completely heartbroken over Kirsten's passing on Monday morning.  We send our love and light to Ian, Susan, and the rest of K's family. There truly are no words for such a sweet, kind, warrior.

Kathy, mother of Eric --
posted this on a tribute to Kirsten on our Hodgkin's forum,
she posted this specific poem because Kirsten posted it for Adrienne.

Three great warriors.. whom will always be held close to my heart.
Please remember to hug the ones you love...

-------------

For Kirsten,

A Parable of Immortality
by Henry Van Dyke

I am standing upon the seashore.
A ship at my side spreads her white sails to the morning breeze
and starts for the blue ocean.
She is an object of beauty and strength,
and I stand and watch until at last she hangs
like a speck of white cloud
just where the sea and sky come down to mingle with each other.
Then someone at my side says,
"There she goes"
Gone where?
Gone from my sight . . . that is all.

She is just as large in mast and hull and spar

as she was when she left my side
and just as able to bear her load of living freight
to the place of destination.
Her diminished size is in me, not in her.
And just at the moment
when someone at my side says,
"There she goes"
there are other eyes watching her coming . . .
and other voices ready to take up the glad shout . . .
"Here she comes"

-------

Sending all of you love and light,
B

Lighting a candle for Kirsten

I have the amazing opportunity, to connect and meet lots and lots of cancer warriors.  Through the lovely web-sphere, and just everyday life I am constantly forming, beautiful relationships with fellow sisters and brothers who face some of the same adversity, that I do.  Although there is a very significant bond between any cancer survivors, there is an incredibly intimate one between refractory HLers.  It just happens -- I can't explain it, but we all understand each other in a way no one else would.

One of those women, is Kirsten.  I can't even begin to tell you how this woman inspires me -- and has been such a tender, loving, form of support. But she has. Besides her amazing humor and wit, she practices meditation, mindfulness, yoga, and surrounds herself with positivity in a way that I strive to do in my everyday life.  When, I was down and out last year and this summer, Kirsten and her mother both sent incredible healing vibes and positive thoughts my way.

Now it is our turn, Kirsten has been having some difficulty with her treatment, and although none of us know exactly what is going on in Vancouver, we are all thinking of Kirsten.  Her family, has asked Kirsten's friends and family to please light a candle for her in the next few days, to give her comfort.  I hope you take the time, this week, just for a few minutes in your own house, if you have candles or when you see the sunshine or any form of light (because that is what Kirsten, truly is) to think of her, her mother Susan, and the rest of her family.

Tonight, and every night this week, we light a candle to send love and light to Kirsten in hopes that Kirsten is not in any pain, and strength for Susan, Ian, and the rest of Kirsten's family during this very difficult time.

To visit Kirsten's blog please: click here.
Please, please, keep Kirsten in your thoughts as this week unfolds.

Sending love and light,
B.

New Clinical Trial: for EBV positive tumors.

(If you wish to continue to read this blog, once it turns private next month, click: here.)

As of recent (the last ten years), Baylor Hospital College of Medicine in Houston, Texas has been creating a clinical trial as a vaccine for Hodgkins patients (especially relapsed and refractory) for those who have tumors that are EBV positive. I believe, after research, and watching a few other warriors go through this vaccine who are EBV positive (we carry a virus, in our immune system that is the causation for mono), that this is a major key component to some of us who have very, very stubborn disease.  Dr. Bollard, who is in charge of this study down in the heart of Texas explains the process much better than I do.

So, I am copying and pasting her email to potential patients for those of you who have refractory/relapsed HL.  Believe it or not, there are two different arms of this study (one for those who have relapsed and are in current remission, and those who still have disease). So whether you are in remission (like me right now!) or are currently on clinical trials. You should definitely get your tumor block tested for EBV positive tumors. This can be done by contacting Dr. Bollard, and sending her your tumor block.  The process of this trial takes about 4-5 months, in October, I was lucky enough to start -- and now the infusion I will receive is ready, and I will receive it once we receive the results of my next PET/CT scan on February 17th.  Either way, if I am in remission or not -- we have a plan.

Here is the email to potential candidates for this trial: please, please consider it if you have relapsed, and get your tumor tested for the EBV virus.  This trial has had phenomenal results, and it is more of a vaccine opposed to 'treatment' or chemo.

------
Thank you for you interest in our T cell studies for EBV lymphoma. Our current protocol uses autologous LMP1 and 2-specific Cytotoxic (killer) T cells (CTL) either as therapy for relapsed EBV+ve Hodgkin Disease (HD) or non Hodgkin's Lymphoma (NHL) or as adjuvant therapy after autologous OR allogeneic transplant.

In our previous studies, we successfully generated EBV-specific CTL in patients with EBV-positive Hodgkin's lymphoma (Roskrow et al, 1998 and Bollard et al 2004 J Exp Med). However, only very small percentages if any of them were LMP2A- (or tumor)-specific. These small populations of LMP2A-specific CTL did however induce complete remissions in some patients but we were unable to eliminate the EBV-positive Hodgkin's lymphoma in patients with bulky disease. In patients who received the CTL as adjuvant therapy post autologous stem cell transplant all remain in complete remission over 7 years later. In patients with bulky disease it is possible that LMP-specific CTL have good killing ability in these patients but that their low frequency precludes effective tumor elimination. We therefore went on to expand LMP2A-specific CTL in the laboratory in large numbers from patients with relapsed lymphoma and treated 30 patients on this protocol and saw complete clinical responses in 80% patients with active EBV+ve Lymphoma. Only one patient who was in remission at the time of CTL has progressed with the rest remaining in remission over 5 years. We have now started 2 new protocols generating T cells specific for both LMP1 and LMP2 (LMP1 and 2 specific CTL). LMP1 and LMP2 are the EBV proteins present in about 20% of patients with Hodgkin disease and NHL and these T cells that we grow from the patients in the laboratory should recognize and kill tumors positive for EBV.  We have not seen any toxicity with these studies but they work best in patients with relatively minimal disease.

If you are interested in this study the first thing to do is to send me a copy of your pathology report confirming EBV positivity of your tumor. This can be emailed to me or faxed to me at 832-825-4732.

The other issue is that the entire CTL production process can take 3-4 months depending on the patient so we would want to collect blood at the earliest point possible to initiate the EBV-transformed B cell line (LCL) which we use as the antigen presenting cells. Ideally we will first collect your blood, the nurse practictioner  will contact you to get your details and send a (blood) kit to you. Once you have the kit with the blood tubes and the consent form and the donor questionnaire I will call you to get the phone consent to draw the blood.

You would have to sign a consent form to consent to the procurement part of the study (i.e. giving us permission to make the CTL lines) only. You would have to donate approximately 60mls of blood on two separate occasions. As I said above, the consent can be obtained on the phone and the blood can be shipped to us. If it is possible to grow T cells (CTL) from you - once they are made and if you were eligible after autologous stem cell transplant and wanted to participate then you would have to come to Houston twice to receive the T cell infusions.


Kindest regards,

Catherine Bollard,MD
Associate Professor
Texas Children's Cancer Center,
Baylor College of Medicine
6621 Fannin Street, MC3-3320,
Houston, Texas 77030
phone:1-832-824-4781
fax:1-832-825-4732
Email: cmbollar@texaschildrenshospital.org

-----
Please look into this study warriors! I personally know two individuals (one who has continued remission for over four plus years), that this has been successful for.  It's this new stuff on the horizon that makes me hopeful!

Sending love and light,
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!