Learn, Change, Adapt, Move Forward.

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

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

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

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

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

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

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

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

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

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

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

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

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

Love and Light,
Bekah

Hello October!

October brings crisp fall days, boots, pumpkin spice lattes, big sweaters, apple picking, hay rides, and thoughts of Adrienne..

This morning started off with thinking about one of the toughest, bravest warriors and her mother, Adrienne and Alison.  Adrienne survived with HL for over thirteen years, and is probably one of the primary reasons why I, and so many other warriors are alive today.  She showed us it was possible to live with this disease as a chronic illness and still achieve your life goals.  Today marks three years since Adrienne's passing, and her presence continues to impact my life and my ability to continue this lifestyle -- just as she did.  So, today we remember Adrienne and also send love to her entire family, especially her mother Alison, who has shares/d invaluable experiences and information to help other cancer patients in this journey. Today, we remember Adrienne.

Without Adrienne and Alison, I wouldn't have met with Dr. O'connor today -- the man and my oncology team that has kept me alive for almost six years with this illness.  It felt almost fitting that Dr. O, Ellen, and I of all days, were within the same four walls.

This meeting/check-up consisted of discussing these rare and intense side effects that have mostly subsided since decreasing my dose of Revlimid from 20mgs to 10mgs.  At this point on the 10mgs I am left with the following:

Revlimid side effect (10mgs)s:

• Neuropathy.  We are treating this with Cymbalta.  At this point I am completely numb in my toes, the padding of my feet, as well as the tips of my fingers.  In addition to Cymbalta I will also be researching Acupressurists in the Bucks County area.  

• Pain levels.  My body-pain/aches have definitely decreased.  Instead of being at a seven on a one through ten scale, I'm now around a three.  Unfortunately still in pain, but better than before.  Taking IBprofin everyday is taking the edge away.  In addition, I have shooting pain about 5-6 hours after taking a dose of Revlimid within my upper chest (the reason for my hospitalization last week when we thought it was a blood clot), and when I take a very deep breath.  

         O'conner's hypothesis is that this is tumor lysis syndrome, a break down of cancer cells dying that  
         can cause intense pain where the tumors are located.  If this is a correct diagnosis than the pain
         will decrease over time as the tumor cells begin to die off, since there will not be a large disease
         burden.

• Hair thinning, I'm losing very few strands a day, but still when I wash my hair, I am losing hair.  Mentally this is never a positive thing for someone who's lost their hair several times, but I'm trying not to focus on it at the moment. 

My team and I have decided I will continue on the 10 mgs of Revlimid indefinitely if I can tolerate the pain and neuropathy or they subside over time.  In addition, I scheduled a port surgery to replace my old portacatch with a new power portacath so my tender arms never have to be touched again for  imaging/scans! Although it's never fun to get surgery, I am super excited to not have to endure anymore needle sticks, hours of waiting for a nurse to access a viable vein, or the bruising that comes from missing my veins time after time.  

This new port, we will be able to use for all of my scans, blood work, and anything else that needs a vein access.  Some twenty-eight year olds get a new car and are excited, I'm off to receive a new port-a-cath, and I seriously can't wait. Other positive news to relay is that I am back up to 122 pounds.  I thank everyone who sent over or dropped off food as it obviously stuck, and I am almost back to my normal weight, all good things! 

Lastly, if you would like to financially help in anyway, you live in the Bucks County/Philadelphia area and you would like to book a family, engagement or budoir professional photo shoot, my good and dear friend, Ms. Jillian Bauer, is running a special now through December 31st.  Please check her out as part of the proceeds are a contribution towards my medical/treatment costs.  Please click here for more details. 

Here's to October, the crispness of fall, and Adrienne.

Sending Love,

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.

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.

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.

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.

The Unwritten Code

There is an unwritten code between refractory folk of Hodgkin's Lymphoma. The few that live the lives that we do, are constantly in and out of treatment. Some of us have incredibly great, wonderful, and high months, while others, are bedridden, jumping from trial to trial as fast as possible to stop the cancer side effects and figure out which path is the best approach. And then, slowly, ever so slowly, our roles change.... those who were in high places, might dip into small depressions or too much fatigue, those who could not see a light at the end of the tunnel, are now more fully functioning. 

The refractory folk, the cool kids club, that I and many of my friends belong to -- would never wish our worst enemies to experience this life.  Because the constant unpredictability, unsettling, unbalance, and the big unknowns that occur to us and our peers are daunting. And although we realize and know we should be thankful that we have a 'chronic' cancer... this is still, hard. Especially when you are in the middle of a treatment burnout (treatments that run longer than a year), or are hitting dead ends when there isn't a new treatment out and you've relapsed, or need a new treatment as soon as possible. 

We attempt to continue our semi-normal lives, but instead of scheduling times to see movies with friends or luxary vacations. We schedule trains and planes to the best cancer facilities in the world, with the hope that they have a new, responsive, chemo, that would like to eat our cancer cells and get rid of them for a decent amount of time.  We really never know what is going to happen once we've signed up for the trial, they say there will be some side effects (but others always show their faces later down the line). And just as the doctors hand us over to our nurses for blood work, we hand our bodies, our souls, over to the oncologists who think, they might have an answer for us. 

We lose weight. We lose hair. We lose our sanity. We lose our drive. We lose our motivation. Sometimes, we even lose our fire to keep going. But the nice thing about our group is -- when some of us are up, and doing well, we can pull those other warriors who are in the trenches with their families, pull them up, and wrap them in an abundance of support. 

I've witnessed this. As it was only a few short months ago -- I did not think I could humanely particpate in any more treatment, I thought I was done. And somehow, with all the support, and the knowledge and the unwritten cool kids club code -- I saw others reach in, pick me up. Pull me towards them, and let me cry on their shoulder.  Unfortunately, and fortunately, some of the tides have turned.  Because of these brave warrior men and woman, I am standing before you, registered for four master level classes next semester, and hoping for a great scan next week. 

But that is not what the point of this post is about, it is to look at those... who need a bit more support, to look at the individuals who pushed ME, who did not give up on ME, who continued to tell me, I have more fight left... and return these amazing favors.  That is what we refractory folk do, when one is down, the others will pull them up -- as much as we can.  They would do the same (if not more) for us, for me. 

These positive thoughts and love go out to:

• Alison and Adrienne. Adrienne's Unveiling was last weekend, and I can't even imagine how painful the experience was for all of Adrienne's friends and family, and the woman (Alison) who put all of this together.  Alison is one of the strongest mother's (and woman for that matter) I know, please send her caring thoughts in the next couple months...

• Mike has experienced Hodgkin's Disease for almost 10 years now.  The last few years, he and his Mom, Sharon, have been in and out and in and out of various treatments, with Mike's low blood counts he's been unable to find a stable study that do not destroy his plateletes.  Sharon & the fam, recently decided to move Mike into Hospice care, as he is in pain and at times unaware of his surroundings. You can leave Mike and Sharron a comment on our Hodgkin's board if you wish: Click here. 

• Kirsten, who I find to be the most hilarious women I've ever encountered, is having a bit of pain trouble and lots of fatigue, she's gone straight from the Bendamustine to another chemo, and the treatment burn-out is definitely NOT fun. If you'd like to send K some encouragement, please write to her by clicking here.

• Lastly, but certainly not least, Anne is having her allo-transplant done within the next two weeks full of chemo and then she will receive her sisters stem cells.  This is a huge, huge moment for Anne, as we truly hope that the cancer is gone for GOOD after this being her second transplant.  Recovery will be difficult, but please send her some love.

There are many others having difficulty right now too, but if you have any positive thoughts, prayer, or warm thoughts, I know they would love it, if you sent them their way.... If you have something that you would like to directly send to them, through email (and can't figure out how to do it yourself). Please leave it in my comment section with who you would like to dedicate some words or thoughts to, and I will be sure to send them to any of these individuals.

Although there are many days, weeks, and months that I wish I did not have this cancer.  I am incredibly grateful and humbled to be a part of this group. They are the most empathetic, sensitive, deep, introspective, and caring group of individuals I have ever experienced. 

We're rooting for ALL of you, 

Sending love to each and every one,

xoxo 

B

I live for them.

This will be a lovely, long update, so please pull up your favorite comfy chair and some peach tea, and settle in...

Although treatment last week was a bit rougher than past treatments, numbers and weight were absolutely excellent.  After last month's weigh in at 105.7 lbs, I pumped myself up to 110.8 lbs last week. Another five pound increase was an incredible milestone, I have now officially gained 20 lbs in the last six months after my many hospitalizations last year, it finally appears I am hovering over my normal weight (115lbs), and after the next month and Thanksgiving coming up I'm hoping to find myself around 120lbs as I head off to Greece with the loves of my life in December... A PET/CT scan is set for November 11th, and treatment will continue that afternoon into November 12th. This will be round five of the bendamustine (I will only receive six cycles in total).  My ESR/SED rates/values have been below 15 for the last two months -- this in itself is a triumph.  We obviously hope that it continues to stay at a normal rate, especially once treatment ends in December.

My energy has also been at an all time high, with hitting the road almost every weekend to visit friends and family in different states.  Midterms are complete in my classes, and it's pretty smooth sailing for the rest of the semester until Finals set in again. Although I am incredibly grateful for being able to take classes this semester, its amazing to me how I crave more challenge, more discussion, more richness from this program.  There are many nights I head home after class, missing, desperately my Lesley Education in Boston and the connections I've made... however, I'm thankful for this second chance at my Master's and know once I'm back in the field interning this coming year, another piece of my puzzle will be filled.

Aside from having a wonderful oncology team, supportive family (who I get to see SO MUCH more often now that I am living in PA, that makes me smile). I am also ridiculously thankful for every person who has donated to the 'Rebekah Fund.' No one realizes how expensive New York becomes during treatments, since we have to buy food there (and are trying to plump me up), as well as garages to store our cars, gas, and other expenses. Honestly, without all of the donations (especially from my Uncle Jay's work -- designed by JANE in a Bekah Bouquet).  I'm not sure how we would have swung it this month.  I thank those who have donated five dollars, I thank those who have donated more, you have no idea how fortunate I feel... to have all of you, and your kindness connected to me in some way. I truly, truly appreciate it.

With all of these amazing pieces of my life, the stability of treatment, and finally being able to spend quality time on campus, and with my beautiful family and friends -- most would attempt to ignore the other underlying meanings of this month.  But, what I've learned most from this disease is, that even though I may have some short-lived happiness, there are others, still struggling... there are others I love and adore that these weeks and months should not be ignored.

I find it's easy to turn a blind eye, when things are going so well for you personally.  But, without some of the people who have touched my life in the past, I would be nothing and no where I am now, without them.

October is a ridiculously difficult month in my heart. Two years ago, I lost my dear friend Scott, who I still think of every day to this ugly disease, and a year ago... many of us lost Adrienne. Though the leaves and foliage are bright and vibrant, and smiles, pumpkins, and coffee's are shared, there are few moments in which I don't think of these two during these weeks.  My heart continues to break for both families, and as Adrienne's Unveiling is this weekend,  I can't help but wish all of this -- for Scott, for Alison, for Adrienne, and for those of us who are still fighting, that this... is all a bad dream.

Now that I've entered into a new program, I am asked difficult questions (since I don't have a full head of hair yet), you can tell I've been or am going through treatment.  An older women in one of my classes continues to ask me how I do this, how I keep going, knowing that there will never be an end to treatment, why would I want to live this life?

With a deep sigh, I wish I could describe the privilege I feel that I am still here, that there should actually be others, many of us (Sarah, Eric, Jessica, Pat, Shannon, Jake), that should still be here as well.  That although I have had a whirlwind of good news, and beautiful people who surround me, I still feel it. I feel the difficulty of this disease, the rawness and vulnerability of tireless treatments, the damage and brokenness that one can feel.

Why would I want to live this life?  Because with as much pain that I allow myself to feel from others and my own disease, I have a chance (for some reason or another) to still be here.  Living.  However and in whatever way I can. And I keep going because I know they would for me. I know Scott, I know Adrienne, I know Sarah, I know they would all feel the pain, as much as I do, and have it motivate them.    For the last four years, I have woken up many mornings with the knowledge that this cancer will grow in me for many years, and I have to be okay with it... I attempt to suck as much marrow out of my life as humanely possible, and I know that when I really really live out my days, I live it for them.  I live it for those who can no longer be here.

So, I ask you, while you hug the ones you love this October, live for the ones that are no longer with us.

'She who has a why to live, can bear with almost any how...' -- Nietzche

Please send love and support to Alison, Adrienne's mother.
Wrap her in your strength and warm thoughts please.

- B

Love for Adrienne

Although I claimed to stay away from my blog and updates (and I will, for myself), I needed to take some time today to ask you all a favor...

A dear friend, Adrienne, (the beautiful woman in the middle of this picture)

....who has been the inspiration for my treatments in the clinical trial world, and her mother, Alison who has been a huge medical advocate for me and some many Hodgkin's patients are having a difficult time right now. Although Adrienne has had Hodgkin's for more than half her life -- She is leading a wonderfully colorful-good quality of life (just as I) thus far; therefore, when she was recently admitted to the hospital and now is in the ICU, it was a complete shock to most (especially Adrienne herself, and her family), as we were all just power walking through NYC together two weeks ago.

I ask for you, today, with everything you have. To please send your love, thoughts, and positive prayers to this amazing woman. She is not only a dear friend, but a pioneer in the world of Hodgkin's Cancer treatment everywhere. As she has taken the first steps... for all of us. Into new treatments, new trials, and a new-possible way of living.

And if you have enough love, to give more today -- please stop by her blog. Click HERE. And leave Adrienne and her family, a message of support. Adrienne and Alison are warriors on their own, but even warriors now and then need our love and positive thoughts of support.

Again, please continue to check Adrienne's blog for updates, as they are taking things a day at a time, and our hope is she will be out of the ICU and home with her family, as soon as possible.

Love,

Bekah

Can I get a 'hell yeah?'

First, I just want to say -- I LOVE sharing wonderful news with all of my family and friends. But, this does not mean I am naive of how short-lived this good news can be, nor the fact that a lot of my fellow warriors are still in the trenches themselves. Before I begin my own update, I just wanted to take a moment to send some love to four hodgkin's survivors who have supported me in some form over the last few years, who are still facing some battles (however, are totally finding their inner strength to keep moving forward). If you have a moment today, please visit these fellow warriors' blogs:

* Adrienne who is having difficulty with pain management, and looking for new treatment as she proceeds down the clinical trials track, please send her love and pain-free positive thoughts.

* Hillary, who recently had a biopsy done after her second transplant, which revealed her cancer has returned and is now starting another treatment protocol. Please send her words of encouragement as she prepared to undergo another treatment plan.

* Chris, who recently relapsed after his tandem SCT and is starting the SGN-35 Trial today. Here's to a smooth transition Chris, with minimal side effects.

* And Eric, who has kicked the Hodge to the curb, but doctors are suspicious of him now having a blood disorder (aplastic anemia) in which he is now receiving treatment (ATG) for -- and experiencing not-so-fun side effects. Please leave a comment for Eric and his family and they are now battling another disease..

Sending love to all of you...

-----

So... onto the Bekah update! I received a CT scan yesterday after just barely two cycles of Doxil. And the reports, came back wonderful! The Doxil is working! Which is cause for celebration. To break it down for you, I have three major tumors in my body (the other two are small outside spleen lesions, below 1cm in diameter) that were managed throughout the last year. These nodes shrunk... as the evidence is all in the numbers :) My lymph nodes are measured by centimeters. The numbers in Green are from my May scan, the numbers in PUPRLE are from yesterday's (August) scan.

Portacaval lymph node : 1.8 x1.7cm verse 1.2 x 0.8cm

Mediastinal Node: 3.9 x 1.5 cm verse 1.8 x 1.3cm

Right paratrachael node: 3.4x1.8cm verse 2.1x1.6cm

As you can tell there are significant decreases in these nodes. After speaking with my oncologist he believes that after another two infusions (cycles of Doxil), that the nodes might be so small -- there might only be scar tissue left. Therefore, my next scan will be a CT and PET scan. The PET scan measures metabolic activity (cancer hot spots), so if those nodes do not light up -- that means, there is only scar tissue left. But, let's not get too ahead of ourselves.

This scan is great news! It means my disease is still very responsive towards treatment. Therefore, we will do two more infusions, and scan again to see where we are at the end of September. I will be meeting with the lovely and famous Dr. O'Conner next week, which coincidentally will be on the same day Adrienne and Alison will be there! So, we will be having a party in Dr O's office and then a meal somewhere in NY, as I can't wait to see the girls again! And they will get to meet the moms this time :)

During our meeting, I hope to gauge our next steps after Doxil. It appears if this treatment continues to do what it's doing -- I will get some time off after theis next set of infusions. Possibly 1-3 months off of treatment. No drugs, no chemo, no side effects for 1-3 months! How AMAZING is that?! And to discuss when to scan, again. Because, as I've said before -- most likely my disease is not curable. It will come and go, for years on end. Now we have to balance when to treat and when not to treat. And, how much time we allow my disease to grow back again before we put a next set of treatments in place. In other good news... though, this means full steam ahead with three classes and a fall internship starting in late August.

However, for NOW. I get to celebrate. The treatment is working! The cancer is shrinking! and I am feeling great! Right after I got my scan news, I seized the day and bought cheap Jason Mraz tickets and dragged Amy and Mandy out with me to celebrate, right on the water, at an outside venue in Boston, with beers in hand...

It was a great night -- and yet again, I could not stop smiling :)

Again, I can't thank you all enough for your words of support and love these last two months, with the new adjustment of treatment. I hope you take my good news, and celebrate this in your life as well! As you all have contributed so much to my happiness too :)

Cheers!

Sending tons of Love,

Bekah =)

Summer of Bekah!

Well, for me at least ;)

This is my official, summer vacation for the first time in three years.

I worked my little butt off this semester -- which definitely paid off. And LOVED every second of it. In fact, not seeing some of my favorite future-therapists in classes these last two weeks, has left my brain much less stimulated (miss you ladies!). 

However! Now is time for fun in the sun.  This afternoon I am high tailing it down to Miami, FL to meet up with two beautiful women, Adrienne and Alison. All in all this is a MUCH overdue visit with two of my favorite people who continue to fight this disease, just as I do.  After some R&R with the girls, I'll then be driving to lovely, Orlando for a day in Disney with friends.  

And THEN, after two and a half years, I'm returning to good old Jacksonville, Florida. My kids (who I taught two years ago) are graduating elementary school next weekend, and with it being my last time before they all part to separate middle schools, I wanted to give them one last hug.  So, I'll be seeing old co-workers, parents, and students.  I'm sure it'll all be very, very, bittersweet. But totally worth it. 

After my time in Florida, I head back to the bean for a quick weekend class..

and then, will spend a little over a week in PA visiting the moms -- spending some time at the Jersey shore with my family, and basking in the glory of summer. 

Although I'm looking forward to my summer classes turning up the heat in late June. I am ready to be a beach bum for a few weeks. And see some of my favorite faces. 

As for the cancer talk -- some things are in the mix, to change treatments: it appears that I'll be ending the LBH clinical trial in the next month and starting Doxil up sooner than anticipated. However, all of that will be attended to, once I return from my vacation. Once again, if you would like to continue reading my blog, please click here, and read. 

For now! I am officially declaring -- this the 'Summer of Bekah' and I am going to enjoy every minute of it.  You should too. 

  Remember to hug the ones you love today, and everyday. 

Sending Love, love, love...

B!

--

(Please note: We lost another member of our hodge army this week, please stop over to the Parr's Blog, and leave a message, as Pat (James) passed away Tuesday afternoon, leaving behind his young wife, two year old son, Josh, and lots of family and friends who are grieving.)

Where's the anger?

First, I wanted to thank you all for the input on the blog. I do think the best scenario will be to privatize my settings, so that those who read it now -- can read it in the future. And, I welcome you to pass on my name and blog to those entering transplant or clinical trials.  I will be starting this transition in August. But, I appreciate the feedback -- I really do. 

---

In the last three months, the hodgkin's community has lost three dear individuals.  Ms. Jessica Wentz passed away last week, and it is evident that there is a little less light in the world, especially for her two younger children and husband, Tommy.  

Jessica's passing, and others in this last year, andmy own disease triggered some thoughts, that I've been confronted with as of late.  At twenty two, when I was first diagnosed with this illness I was filled with anger. I was enraged. pissed. absolutely wrought about having a second disease before the age of twenty five.  And, good lord, I showed it. 

As the months go by, and I begin to meet, interact, or talk to other individuals who have had years of treatment or are chronically ill.  You get the sense that they aren't too angry.  I would always be baffled during my first treatment, when I heard cancer patients saying, "It'll be okay, I'm not to thrilled about it, I'm just glad to be spending time with my family..." I would look at them and think -- don't you want to destroy the world? Don't you want to scream up to the heavens and YELL 'I think i've had enough character building already?! can you pick on someone else?' I was always so amazed, when these warriors spoke with such calmness. Hardly any animosity... I was always curious, where was their rage? 

Most likely, if my first line treatment was successful. I still would have it. But, after over two years (plus previous years of kidney issues), I've realized (or grown up, one of the two), that anger takes a lot of energy. I can see myself getting upset during my first few rounds of chemo, resisting the life of a cancer patient, enraged that I had to be part of this, I had to participate, because how dare I be diagnosed with a second disease? 

In turn, it's definitely been a time of growth. Everyone knows I've got a little chutzpah in me. But, we, cancer patients -- or those found in the chronic illness bunch, we have to prioritize. We have to manage. We don't have ALL the energy in the world.  I guess I bring these points up, because I felt, for a long time, that I wasted my energy getting angry.  I pushed people away.  I put walls up. I was mad. Mad at the world, for making me deal with this disease. 

The irony of it all is -- the anger doesn't make it go away. And, it doesn't totally make you feel better after you've ripped your doctor, friends, or family members to shreds, because you are so upset that you have this illness.  But, maybe we all have a time... that this shifts.  I felt humbled when another cancer patient asked me recently, "God, you must get so annoyed that this is what you have to go through.  I would be so pissed how much it messed up my life." 

Yeah. Of course I am a bit annoyed. Of course, this is a bit difficult. But, in the end, the cancer, the treatment, the physical side effects grab ENOUGH of my efforts, enough of my energy, enough of my body, enough of my attention away from 'normalcy.'  So, why would I want to hand over the rest of it to this disease as well?

So, the question. Where did my anger go? I can't say that it's totally vanished, or that I've matured so much in the last two years that it's disappeared. But what I can say is, the anger takes time and energy. And those calm cancer patients -- that don't feel like destroying the entire world around them? They make a lot more sense to me these days.  It's amazing how many things you can accomplish, and fulfill when you're not enraged every moment of the day.  And, I hope that this will be something you can all carry with you as well.

Because really -- could you even IMAGINE how much energy it would take to destroy the entire world?  So much. 

Well, at least much more energy than grad school -- 

and honestly, I'd rather be doin' that. ;0)

Sending Love, love, love...

B

Heartache for a fellow warrior.

The Hodgkin's community is a small one. The refractory hodgkin's group is even smaller. We form friendships, we know families, we share treatment ideas, and extend our knowledge to hopefully help others. 

Jessica Wentz is a twenty six year old, hodgkin's refractory warrior. With two, absolutely adorable children, Macy and Thomas, and her beautiful husband, Tommy. 

Although I can't even really put into words what is happening, Jessica, who was hoping to travel to DC this week for a clinical trial, has weakened due to the progression of her cancer.  After two years of battling, through chemo, and a transplant, it appears her family are now calling in hospice care. 

It saddens me, to no end, to share this news. 

But, I ask if you have any time. To leave a message for her family.  

As her health is weakening by the hours. 

Jessica has always been one of the first individuals to offer help, advice, or encourage others in times of need.  I can't emphasize enough how hard, she fought, and continues to fight. 

If you have the time, and comfort of words. Please leave a comment for her family, and all of those who have watched her bright spirit, by clicking HERE, to leave words on her caringbridge site. 

Sending love to the Wentz's. 

... make sure you hug the ones you love today.

and everyday.

all my love,

B. 

 

One year old.

In a few short days (April 22nd) marks the one year anniversary of receiving back my stem cells, at Upenn Hospital. It's amazing, how fast a year flies by. In no way do I really want to reminisce about the good ol' times in the transplant ward. But, I do believe that it's important whether or not your transplant has failed or been successful. That, those transplant warriors, congratulate themselves -- if you're still alive, still fighting, no matter what you're a survivor.

And, all that matters. Is I'm still here. Failed transplant or not. In the grand scheme of things, one year old bekah is doing pretty well =)

So there are few things I must update with all of you...

1. I received my scans from last week. And, we are still in the 'stable' disease range. However, through most of this trial. There is one main node, in my upper chest (the first place, I always relapse, and the first node that showed up on the PET scan after transplant), that continues to grow millimeters. Everything is tiny. M&M size remember? There aren't alarm bells going off. We are still stable. The other nodes, have hardly moved in any direction on the 15 mgs of LBH. However, if this one node continues to go at the pace it is -- in progression. My estimate is that I will be thrown off the trial in September. And, we will move to the next drug of choice: Doxil.

Am I upset? I obviously wish I could continue this trial for the rest of my life considering the quality of life I have at the moment. However, this trial has lasted me an entire year. A lot better than I expected.

Is this for sure? Absolutely not. Recently, in I informed most of you that I asked for more chemotherapy. We increased my dose from 15mgs to 20 mgs. This scan did not show any of the results from this dose increase. Since, I had only changed my treatment, less than a week before the scan.

So it could reduce that one node on the 20 mgs? Definitely. The last time I was on 20 mgs, my plateletes and blood counts were bottoming out. I could hardly stay on the 20, and we thought for sure they would throw me off the trial, since my body was not strong enough. But! i've been on the 20 mgs of LBH for about two and a half weeks now. And, as of this morning. My blood counts (after taking a small hit last week), are slowly coming back up. Which means, we might get a full cycle without any holds, or interruptions. Which could definitely be helpful in reducing this one node.

So, the worst case scenario? I have an incredible summer on the LBH, as it is holding the cancer at bay, and not allowing it to spread like wild fire. Take summer classes, enjoy a SUMMER (which I haven't experienced in about three years), and get a tan. Then, we most likely will get a scan in August, and change to Doxil Chemotherapy.

Best case scenario? The 20mgs, does some damage. And, we ride this horse until the cows come home. =)

Most likely though, we will prepare for the change in treatment, for this fall. Which is fine.

2) My life!
Things have been great on the school front, I've accepted my clinical site internship from Sept-May of next year. I will be working with children ranging from 5-18 years old, doing therapy with child witnesses/victims of Domestic Violence, counseling young women in rape crisis, helping out with a teen dating curriculum for middle schoolers, and group therapy with populations of children who have been sexually assaulted, witnessing, or other forms of trauma.

It's going to be the most rewarding experience I've ever done. But, after two years of waiting for the opportunity to work with kids again, I am more than ready. So, internship + classes + chemo = busy year, next year. But, I am incredibly pumped for it to begin.

In addition, my 'overload' semester is almost complete. As, I only have three weeks left until I can see the light at the end of the tunnel. And have a few weeks off before I lock myself in the library, for summer classes.

3.) The blog -- which is where I need your help.
As my program intensifies, and I begin to have my own clients. It appears that the internet footsteps I am leaving behind, might not be the best approach. I want to help. Obviously, for other young adults going through this period of their lives, individuals with chronic caner, or those that are entering trials that I have information for. However, I am struggling with the reality that this can easily be found. And, I would not want supervisors or clients, reviewing this site. On the flip side, I feel it's important to keep, for other survivors...

So, I guess, what I am asking is for your thoughts. If, this site is no longer helpful to others. It will be an easy decision. But, I'd love to hear what you all have to say.

4.) Hope you all are well. As Spring has FINALLY come to Boston today. I hope all of you are enjoying the sunshine, the start of baseball season, your friends, families, and your everyday lives.

Sending all of you tons and tons of love,
from boston,
and my heart.

<3 B