Conditioning Chemo, Day -5

We are finally here.  In some ways you can look at this transplant as the hopeful end to a story, or the beginning of another -- either way, we're finally here to complete this form of treatment.

I was admitted yesterday (Wednesday) and had a small surgery in which a medical team placed a triple lumen catheter  (basically like my port but it has three different access points for fluids, chemo, and antibiotics to travel through) in my chest.  My site is pretty sore and tender; however, it's very helpful.

I've just completed my first round of in-patient conditioning chemo.  Today is considered day -5 in the transplant world, -4, -3, -2, -1 will also be conditioning chemo days.  Once we hit zero, next Tuesday, we will celebrate my rebirthday since it'll be the day Jacob donates his stem cells to me and my whole immune system will be completely brand new.

As for the transplant and recovery time itself, I have many, many fears about the future, graft versus host disease, surviving, and quality of life.  But, for now, I'm attempting to put all of those fears in a small box and up on a shelf.  Right now, I'm looking at this journey through very specific lenses.  I want and need to take things a day, or even an hour at a time, and all I can do is just that.  Take each day as it comes.

Luckily, yesterday and today have been extremely easy.  The brand new Columbia Prespyterian Hospital's BMT unit is gorgeous -- if such a thing can be possible.  It is an 18 patient unit on the 11th floor over looking the city and the Hudson River.  At night the city lights are mesmerizing, during the day you can watch Ferry boats pass through the waters… The floor itself is extremely quiet, everyone is very respectful, caring and attentive. The 46 flat screen TV, personal chef and menu (just for BMT patients), smoothie carts, caregivers futon, and beautifully tiled bathrooms don't make it that bad either ;)

My favorite PA is on this week, and the nurses have been an absolute breath of fresh air.  They check in on us every hour, without fail.  I find BMT nurses to be the best of the best, most of them have an awesome sense of humor and are brutally sarcastic.  I imagine you have to be, working in this field.  Everything I've needed from nausea to pain meds have been given without questions.  They trust me, and my needs, which is so empowering as a patient facing such a huge obstacle, such as transplant.  The social workers appear to know their shit, which is always helpful, and everyone in general gives off lots of positive vibes.  And most importantly, the areas surrounding the hospitals all are filled with tulip beds… red, white, and purple tulips everywhere. Good signs.

For now, it is smooth sailing.  The Flubaradine (chemo) that I received today and will receive the next four days went well.  No side effects to speak of yet (knock on wood), and hopefully it'll be well tolerated.  Most allo-transplanters say this is the easy part, the chemotherapy and treatment, it's really the recovery when your counts are non existent from Day 0 and on…. that are the darkest and most difficult.  But we will see.

One day at a time.  One hour at a time.  One minute at a time.
That's how we'll roll these days :)

In addition, I just wanted to take the time to endlessly thank ALL of you.  Your love, laughter, pictures, reminders, strong positive vibes, and caring words motivate me every single minute of the day.  I am so, so lucky to have every single one of you in my life.  You care for me, empower me, and love me -- and for that, I thank you.

This next year we'll be kicking off our fundraising goals into high gear to pay for this transplant.  Right now if you'd like to help out with the financial journey, or just buy some cool and delicious things, to check out my fundraising page at HelpHopeLive where most of the fundraisers will be listed.  Right now there is a 5k 'Stepping out for Support' that my in-laws are participating in, which you can sponsor donations as they dedicate their walk to me.  There is also a carmel-chocolate covered pretzel sale going on (possibly a great gift for momma's day!).  And we have a few more days that you're able to pick up your own B-Strong T-shirt or B-Strong Sweatshirt .  The T-shirts/sweatshirt sales will end on May 12th, so get 'em while their hot!  My fundraising team and I encourage you to share all of these goodies with friends and family too :)

Preview of the delicious pretzels that you're going to buy :)

Also, if any of you are one of those fabulous motivated people, we are looking for individuals to fundraise in their areas.  There is no time limit here.  We will fundraise for years if we have to -- what fun, right! ;)  So think carefully and simply: could you throw a car wash? a bake sale? hold a jeans day at your work? Go to a local bar and present them with my story/information/flyers (all of which we can provide you) to ask for a percentage of proceeds on a specific night? Do you belong to a gym? -- could you ask them to add five dollars to a class offered at the gym, and those proceeds go towards my fund?.  Are you running or participating in another athletic event -- if you are, would you mind asking friends and family to donate 5 dollars a mile to save a life? Do you have a vacation home or time share? -- can you raffle off a weekend (10 or 20 dollars a ticket) to your friends/family/coworkers and donate the proceeds to my fund?

My fundraising team has SO many ideas, so if you are stuck, no worries, we can help you find something.  If you want to run your own fundraiser, or need help thinking of an idea, please email one of my best friends, Karen, who's helping coordinate all of this at TrueBeautyFundraising@gmail.com.
She will give you all the information needed, she will direct/help you set up a flyer with HelpHopeLive, and then we can advertise it on my blog so others can help out too.  It's an easy process, and doesn't take too much energy but will go a LONG way.  So think about it :) Again, there is no time constraint.  Also, please remember all donations to my HelpHOPELive fund are tax-deductible.  You can find most of the fundraisers, and direct donations to my HelpHOPELive fund by clicking HERE.

So my hope? My hope for you today is if you live in the PA area is to go exercise on May 17th :) Join my in-laws on their 5k walk 'Stepping out for Support.'  If you don't live in PA, go clothe yourself already! ;) With one of our cool T-shirts/sweatshirts.  And above all, go treat someone you love to something sweet and send them some chocolate…or order some for just you -- you deserve it!

Any questions about the above: please email TruebeautyFundraising@gmail.com.
Sending love to all of you,
xoxox,
B.

Green Light.

After my small Florida retreat, Rich and I hit the ground running with pre-transplant appointments.  From heart, to lungs, bone marrow biopsies to teeth and eyes, and more. Oy vey, it's been a very long and painful two weeks.  But we are almost there. Although the plan of attack was to do one more round of chemo and then transplant, things have changed. Due to being in remission and some appointments finishing up on time it looks like we'll (possibly) be moving into my allogeneic stem-cell transplantation in April.  So get ready… cause here we go.

I have officially been cleared on all fronts except for my teeth.  Last week I had a ton of dental work done (chemo completely destroys teeth, even if you take incredible care of them).  I had molars extracted, fillings, and so much more -- fun times.

On Monday, I'll go in to the dentist to make sure I'm officially 'healed' and cleared for transplant.  From then, we'll have an eye appointment Tuesday morning and I will finally be cleared.  If for some reason my dentist does not feel I've healed well enough -- this time line might change.  However, this is what we're looking at as of now...

Bekah's Transplant Timeline: 

• Monday, April 21st: Final Dental Appointment (and a hopeful clearance from the dentist)
• Tuesday, April 22nd: Optomology Appointment (hopeful clearance)
• Wednesday April 23rd: Clinic Appointment with Dr. Zain and team, admittance to hospital that afternoon/evening
• Thursday April 24th --  Monday, April 28th: Conditioning Chemotherapy for five days of Flubaradine and Melphalan chemo, this will bring all of my blood counts down to zero.
• Sunday April 28th, 29th and/or 30th: Jacob (my hero of a brother) will begin/complete his stem cell collection
• Tuesday April 29th OR Wednesday April 30th: My Re-Birthday, I will intravenously be infused with Jacob's stem cells. 
• May 1st -- and beyond: Hospital Isolation until cells have completely engrafted and then Release Day. This usually takes 15 to 30 days till I'll officially be released from the bone marrow unit.

After the cells have been infused, we wait for my cells to 'engraft' or to 'take' -- meaning, that Jacob's cells will take over my immune system, and I will have his cells and his DNA.  Please send positive thoughts that Jacob will feel little to no pain during his collection, that engraftment will be a success, and that my cell/blood counts will begin to rise after this small but powerful infusion of Jacob's cells.

As we've found out in the last month, things can change on a dime.  So, although this is a hopeful timeline we've learned to roll with the punches, and go with whatever changes are needed.  If you don't see an update, this is how the timeline will stay.  If there is a major change, I will update you all as needed.

Mentally, I feel prepared.  We've been preparing for this since we left for Seattle almost a year ago.  With a remission in our back pocket, a blessing from Dr. O and his team, a ridiculsouly supportive partner, loving family and just kick-ass friends.  I am so grateful for all the support, emotionally, physically, and financially that has been given to us.  We hear you, we're receiving your vibes, and thoughts, and we really do love you all for everything you've done for us through this process.

For communication purposes and support through this process:  The best way to communicate directly with me is through text message or through email (RebekahFurey@mac.com).  But please do not expect a timely response.  If you are looking for updates we will update through the blog and through the True-Beauty-Never-Hurries Facebook as much as we can when we feel there needs to be a crucial update.  If you need to know something specific or check-in with us in need of a timely response, please call, text or email Rich.  We will do our best to respond and send out updates when needed.


----
Supporting someone and their caregiver can be difficult through the transplant process so here are some small bullet points that I thought might help all of us:

What helps through transplant…

• Research: First things first, it may help you to know know what I'm about to go through: Read some quick cliff notes on what a stem-cell transplant or others call it a bone marrow transplant.  Click here to learn about stem-cell transplant.  Mine will be an allogeneic transplant (stem cells from another donor -- my brother).  I already had an auto-transplant (my own stem cells rein fused into me) in 2007/2008.

• Mentally:  As most of you know this is not my first rodeo.  What really helped in the past and through the last few years is text or email messages reminding me that you're still thinking of us, and cheering for us through this very difficult procedure.  A small "thinking of you…." or "I'm sending you big hugs or healing vibes" goes a long, long way for a patient's mentality. As well as the caregivers.  Send us your love -- we welcome it with open arms.  And it keeps us moving forward. It really does…

• Financially:  Rich is currently not working due to being my full-time caretaker, and our medical and daily bills are piling up.  Please visit my tax-deductible fundraising website: HelpHopeLive to donate money directly.  Or pick up a cool 'B.Strong' sweatshirt OR 'B.Strong' T-shirt (both have different designs and are on different websites) the proceeds will go directly towards funding my transplant.  They are being sold through May 12th.

         I am so, so, grateful towards those who have donated thus far; however, Medicare will only cover  
         80% of this stem-cell transplant, so we are in desperate need of funds.  Again we thank all of you
         who have donated already, and those who participated in our recent Stella & Dot fundraiser
         (you raised 800 dollars!).  I truly can't thank you all enough…

• Physically: Cards, emails and your words.  Once we have our hospital address, we will let all of you know.  If you are interested in sending something, please email Rich and he will send it to you.  Or you are welcome to send me an email: RebekahFurey@mac.com.  Once we are allowed visitors (after Jacob's donation) we'll be welcoming home-cooked meals in the hospital (and after release day), as well as those who love to clean to use your cleaning skills to clean our apartment before I am released back home -- it must be 100% germ free (help!)

• Above all, we ask you to support other warriors in the most important way possible… 

Pay it Forward:  Join the Bone Marrow Registry.  

       
         I am so, so incredibly lucky that Jacob is a perfect 10/10 HLA match to move forward with my

         transplant.  However, not all Lymphoma and Leukemia patients are as lucky.  

         Join 'Be The Match', join the bone marrow registry for FREE.  Just fill out some forms, they will 

         send a kit for you to swab inside your cheek and you could literally donate your stem cells (it's    
         just like giving blood) to a stranger, and save his or her life.  Think about it -- then do it.  I have
         many, many friends right now waiting for their perfect match -- it could be you.    

What does not help through transplant….

• Expecting a response.  I always tell my friends and family they are free and welcome to send messages (hopefully uplifting ones!) through this process.  But please know this is a different ball game.  This is life or death here and it can be a very stressful process.  We will do our best to notify those with updates when it is necessary.  For us, we really try to take everything a day at a time.  Sometimes that means shutting off our phones, sometimes that means just not responding to the outside world, sometimes that means just taking things an hour at a time.  We will do our best to respond to everyone in a timely manner, but we just ask for as much space and patience as you're willing to give us.

----

This is the first step to what we hope will be a very long journey of healing… once the donation of cells are complete, it is truly only the beginning.  We have great fears and great hopes, but the outcome of this process is completely unknown.  We could receive a remission from Refractory Hodgkin's Lymphoma (HL) and the Myelodysplastic Syndrome (MDS), or I could relapse with both diseases and even be diagnosed with a a third Graft verse Host Disease (GvHD).  I may survive, or I may not.  Whatever the outcome, we will take this new path one day at a time.  And remain hopeful.  Very, hopeful.

You will find the most recent updates on my Facebook Page, feel free to click here and add me as a friend as family and friends will be updating throughout this process to keep everyone informed too.
Click here: https://www.facebook.com/truebeauty.neverhurries

Please send positive vibes that we'll receive clearance on Monday and Tuesday so we can get the ball rolling and start.  Today, and everyday as we move forward we're choosing hope.  We ask you to please remain hopeful with us too, no matter how challenging these next few weeks and months will be. We choose hope.

And as we all know, life can be sweet -- 

even in the broken places… 

Sending all of you so much love and light,

B.

A Sweet remission!

It's been a long time coming, but we finally got here: 

a COMPLETE remission!

On March 17th, I finally received my remission to start planning the next phase of treatment: An allo-stem cell (donor) transplant.  There are many appointments (doctor and dental), testing, and meetings to occur… but we finally are able to take steps forward to complete this allo-transplant.

Here is our time line as of now:

Yesterday and the 18th of March, I received my fifth round of Bretuximab (SGN-35) and Bendamustine chemotherapy.  We also met with the dietitian, social worker, and financial aid from Columbia at NYP.  However, there is still a LOT to get done. It has been a busy week, and tomorrow we meet with Columbia's dentist, an Echo, EKG, X-rays, receive a Nulesta shot, and run a CBC in case I need extra platelets and/or blood transfusions.

• In the next month: If we are able to fit in all of my appointments, a bone marrow biopsy, Jacob's (my lovely brother/donor) appointments, tests, and treat my teeth (unfortunately with each chemo treatment, more cavities add up which is difficult without dental insurance…) Without causing any infections then we can proceed to transplant in Mid to late April.  Our goal is to only have four weeks between my last chemo treatment (March 18th and 19th) to the first day of being admitted to the hospital.  Which land us on April 14thish.

• IF we are unable to complete all of these appointments and tests, or an infection does arise, or all of our ducks are not in align. We will do one last round of chemo the week of April 14th, and then proceed to my allo transplant in Mid-May.  

• We want to take these next steps carefully and make sure that everything moves forward smoothly.  So that is the plan of attack for now.  As the weeks move on, I will update more to inform those of you when I will be admitted to the hospital, if I'll be receiving any form of radiation, and how many days of intensive chemo I will have to endure in the hospital before my allo-stem cell, to rid my bone marrow of all cells.  Basically this will be a re-boot and I'll start over with Jacob's cells, which means my bone marrow has to be cleaned out by one last hit of intensive chemo (inpatient) the week before I receive my donor cells.

I know, I know, it can be very confusing.  So for now, just know we have achieved a remission -- the first step to this transplant process! And we are still in need of funds even though we are receiving treatment in NYC, for dental, transportation, covering 20% of health insurance (copays, medications/scripts, Jacob's transportation, our rent, and so many other fun bills that we get to pay along the way.).

• So please, please, help and donate to our transplant fund as we make our way towards curing my MDS and hopefully finding a cure for this stubborn cancer. Click HERE: Every donation is tax deductible. 

          Or follow click and paste the website…
          https://m.helphopelive.org/find-a-patient/profile/index.cfm/patient/78B0798F-E787-5EE8-
          F78097B407B3CFCD



Here's to a sweet remission, the first day of spring,
and all of your wonderful support.

Love,
B!

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

Here we go!

Please visit the website and donate HERE, we need  your help!

Here is our press release, if you would like more information and a packet on how to start your own fundraiser -- please email us at TrueBeautyFundraising@gmail.com and we will send you an information fundraising packet.  We have over seventy-five ideas for you! Also, if you'd like to be connected to any future emails for fundraisers please email us so we can have your email for future events.  Or if you'd just like to get one started, please call Rebecca Carr and HelpHopeLive @ 800.642.8339 and say you are running a fundraiser for Rebekah Furey.  She will guide you through the process.

Come celebrate with us during fundraisers and throw your own! Here's to all of you and finding a cure. To look up future fundraisers or check on how close we are to our goal, visit my fundraising website by clicking here.

Dear Family and Friends,

I’m writing to let you know about a dear friend of mine, Rebekah, who needs our help. Rebekah grew up in Bucks County, Pa. and graduated from Wheelock College in Boston, Mass.  In 2006, she went on to fulfill her lifelong goal of becoming an elementary school teacher in Jacksonville, Fla., but her dream was cut short.  Not long after her move to Jacksonville, Rebekah was diagnosed with Hodgkin’s Lymphoma and has been battling this disease for the last seven years, hoping for a cure.

Despite her health challenges, Rebekah was able to complete her master’s in Counseling Psychology, and has been able to volunteer and intern at several domestic violence and sexual abuse agencies; however, in the spring of 2013, Rebekah was diagnosed with Myelodysplastic Syndrome - her second life-threatening diagnosis before the age of 30. Rebekah's best chance for survival is an allogenic transplant (stem cells donated by someone else who is healthy) at Seattle Cancer Care Alliance in Seattle, Wash.

Because of the extraordinary expense of stem cell transplantation, we need your help! Even with 80% coverage of health insurance, there are numerous uncovered expenses, such as: insurance deductibles and co-pays, as well as medical travel and relocation for both Rebekah and her caregivers, as she will need to remain in Seattle for up to six months recovering from the transplant.

Fundraising is vital to the overall success of Rebekah's struggle to survive.

To help with uninsured expenses, a fundraising campaign in Rebekah’s honor has been established with HelpHOPELive, a nonprofit organization that has been assisting the transplant community for 30 years. All donations are tax deductible and are administered by HelpHOPELive for transplant-related expenses only. Please, if you can, make a donation today!

Together, we can make a difference! Help Rebekah get her second chance at life, so she can return to the Counseling Psychology field after treatment to fulfill her passion of working with children and adolescents of domestic violence and sexual abuse.

For secure credit card donations:Call 800.642.8399 or click the "DONATE NOW" button.

To donate by check, make check(s) payable to:
HelpHOPELive

Note in memo section:
In Honor of Rebekah Furey

Mail to:
HelpHOPELive
2 Radnor Corporate Center
100 Matsonford Road, Suite 100
Radnor, PA 19087

For more information, please contact HelpHOPELive at 800.642.8399.
To start a fundraiser please call Rebecca Carr at this number and state that you would like to start a fundraiser for Rebekah Furey, she will guide and give you directions how to start a fundraiser!

Thanks for your support! 

Karen Roller, friend and fundraising chair: Truebeautyfundraising@gmail.com

Transplant Fund has opened!

Click HERE to Donate!

It has begun. We are in the process of trying to raise 100K for my allo-transplant so that I will have caregivers in Seattle with me during my three to six month stay, so we need YOUR help.  We are looking for individuals to donate money, fundraise, donate to silent auctions and more.  More and more information will be available as time moves. For now, we have opened the transplant fund and you can at least donate money through this line.

So, for those who have been asking how to donate money to the allo-transplant fund to get some of the best day to day updates on everything go to the True Beauty Never Hurries Facebook Page: https://www.facebook.com/truebeauty.neverhurries

To Donate: 

*The HelpHopeLive Transplant Fund for Rebekah Furey is open on-line and via the phone.  To make a donation to help with my transplant expenses click here or call 800-642-8399. If you’re interested in planning a fundraising event, please call Rebecca Carr at HelpHOPELive at the above number.  You can donate online via debit, fred card or check.  Click the above website for directions.

Every penny helps, and thank you all so much!
Here's to all of you being so, so generous.  I truly can't thank you enough.

Love and Light,
B!

It's Official: An Allo-Transplant

I know most of you have read the rumblings on facebook or have spoken with me about this, but before I finish up my caregivers postings I wanted to assure you that yes, we are moving forward with an allogenic transplant for my Hodgkin's Lymphoma (HL) and Myelodysplastic Syndrome (MDS).  We are 90% sure that we will be receiving this treatment and it will all happen (chemo, transplant, recovery) in Seattle, WA.

So here's what you need to know a little about the future and treatment:

a) The next time I hit a remission: hopefully on the SAHA between December and March, we will move forward with the transplant

b) This will happen At Seattle Cancer Care Alliance (SCCA) The Fred Hutchinson Cancer Center

c) This form of transplant is with a donors cells we will use my brother, Jacob's cells.  He is a perfect 10/10 HLA match. Some of you might think, wait? Didn't she already have a transplant? yes. I did, but not with a donor cells. I had them with my own cells which did not provide any cure.

d) Rich and I will travel to Seattle this month to research and figure out details of transplant for first steps, we will write more when we return, promise!

----

For the time being though -- we are enjoying three weeks of zero hospitalizations :) (Goodness it feels good...) We are also hoping to spend a few days sight-seeing in Seattle (suggestions welcome!)

----

So, what does this all mean? It means that due to the MDS, and the inability to receive harder chemotherapies, and being exempt from other clinical trials due to my two diagnosis now I've decided to look at the allo (donor stem cell) transplant as my option.  This treatment has a lot of risks, but could also potentially have a lot of benefits.

My game plan with my HL has always been to exhaust all chemotherapy options, every option before I head into a donor transplant since it does have a concerning mortality rate due to complications.  I've exhausted options for seven years now, and now is the time to move forward for the hope of a cure.

If nothing else, I will gain new bone marrow from my brother, rid myself of the MDS and one could even hope that we finally destroy this cancer.  There will be a lot of changes, movement, help needed, fundraising, fundraising, and more fundraising.

This treatment means I will move to Seattle, WA for three to six months and I will need caregivers with me for at least the first three months.  This will mean we will have to cover rent, finances, and quality of life needs between my home with Rich, my mothers' home, and whatever home we will have in Seattle.

We will be developing a webpage by the first week of July that you can access to determine where to donate, where fundraisers will be around the country.  Brainstorm if you'd like to create your own fundraiser in your hometown, it can be anything: a Team in Training Run, selling a product, a beef and brew, ect.  If you have an idea, email  my dearest friend Karen, who has stepped up as my Fundraising Coordinator at truebeautyfundraising@gmail.com

We are already planning two events in Doylestown, a small selling fundraiser in CT, and a possible fundraiser in DC.  We are excited to have this support behind us, but we need more -- we need you to make this treatment happen.  Details will be coming soon.

This is a scary and exciting time.  However, with great risk comes great reward.  A life without cancer -- I never would have thought.  And yet, it could be possible.

Here's to a new door opening and embracing it.
Love and light to all of you,

Bekah

A New Chapter: MDS

This has probably been one of the more difficult posts I've had to write.  Difficult for many reasons, but mostly because of the dissapointment and a little heartbreak that it's caused some people.  Even though, as I explain as best as I can, it shouldn't.  So, I will try my best (try to stay patient with me) as I struggle through this post.

After you are in the cancer world for a while, there isn't much that shocks you anymore.  Some people may say you're jaded or tainted, but I think as time moves on we have a better comprehension of the medical world.  We understand that there are always options, there are second and third opinions to search for, nothing is cut and dry, nothing is black and white, we live in a gray gray world.  So when something we weren't prepared for comes our way, at least for me, it takes a bit to digest but then as information is collected, we soon form plans and we move.  We move slowly, as one of my favorite caretakers in the HL world has told me.  We move slowly. And we do, even with this piece of information.

After seven years of chemotherapy your body can take quite a beating. There are several things that can happen to an individual with that amount of chemotherapy.  You can develop secondary cancers depending on your previous treatments.  Your lungs can start struggling, your heart may not be as strong, your bones can begin to deteriorate.  It's a scary secondary diagnosis world out there -- even for someone as young as I am.  Luckily, none of these diagnoses have happened at this time.

However, there is something that has occurred.  Right after Florida, I received a bone marrow biopsy from O and my medical team.   Previously, on the Revlimid my Hemoglobin (red blood cell production) was taking a nose dive, and then performing at normal levels.  Something was off.  Which is why we went forward with the bone marrow biopsy.  The biopsy revealed abnormalities. Some of them which could have been caused by the Revlimid, but one that indicated I have early stages of Myelodysplastic Syndromes also known as MDS.  In many ways it is considered a disorder that if not treated could lead to leukemia, if you have an aggressive stage.  Luckily, I am at an extremely early and low-risk stage of MDS.

After seven years of chemotherapy, my bone marrow has taken a bit of a beating, and it is showing dsyplastic abnormalities.  Which is why this is considered Secondary MDS, because it is caused by the amount of chemotherapy I've had over the years.  Robin Roberts, if you've followed her also had MDS due to her previous chemotherapy; however, I believe hers was more aggressive.

MDS for those who aren't in the medical field is when your stem cells (which produce your white/red blood cells and platelets) aren't able to fully produce to its evolved level.  Which means you may not have enough red blood cells working in your body, which has been my case in the past.  Right now, fortunately, all of my counts are normal since discontinuing Revlimid.  However, I have a very rare form of MDS called Refractory Anemia with Ringed Sideroblasts (RARS).  This means that I have less than 5% of potential leukemia blasts (precancerous cells) in my bone marrow (I have zero), and more than 15% of ringed sideroblasts (I have 18%). Luckily, sideroblasts are do not turn into anything.  They are just abnormal cells that do not fully produce into your red or white blood cells (that need to, which is why I'm lacking them), but they are not negative or positive.  They are just the percentage that should be evolving into healthy cells that aren't.  So, 18 percent of my stem cells aren't using their full potential at the moment.  

Within the last few weeks, we have met with Columbia's MDS specialist and discussed a lot of overwhelming information which I will do my best to explain and discuss with all of you over time.  For now though this is not a crisis or alarming diagnosis, please know that.  I am in a very, very early stage and very, very low risk.  MDS low and high risk is determined by three factors: How your blood counts are doing (off treatment), Chromosome damage, and how many "Blasts" you have in your bone marrow. Right now, I have none of these factors which makes me low-risk MDS.  Dr. Raza, the MDS specialist, stated that if I was a normal MDS patient and was not looking at anymore chemo, that we would not do anything at the moment.  We would just watch and wait, for years probably.  MDS at this stage is looked at as pre-cancerous cells, and for some they never form, at all. For others, they do.  If they do, an allo-transplant is the cure. 

Ironic huh? The one treatment I have been avoiding for my Hodgkin's Lymphoma for years would potentially cure the HL and the MDS.  Life certainly knows how to make us laugh sometimes. 

Since I am NOT a normal patient, this is what this diagnosis means for me at the moment:

Short Term: 

• My Red Blood Cells will probably give me trouble during treatment, this will mean I need transfusions (hopefully not too often), but I need to be prepared.
• We will also attempt Red Blood Cell Booster Shots to help my Red Blood Cells
• We have to avoid "hard chemotherapy" (Bendamustine, ICE, GND, ect.) Any form of therapy that is not targeted and is a 'stem cell chemo killer,' we can no longer utilize as treatment.
• Having MDS makes me ineligible for some clinical trials, and crosses other hard chemotherapies off of our list.  The result: we will not have as many options as we once had before this diagnosis and have to be more careful
• We will continue on with the treatments we do have, just as we have been to treat the HL.  At the moment we will revisit SAHA at a baby dose. SAHA is also a management treatment for MDS.
• We are researching for future allo-transplant treatments, now. We are so grateful for all the donations that we've recently received thus far.  If you would like to help us travel to Seattle and other cancer facilities for us to continue our research and where a potential future transplant could take place. Please read this post: click here. Or look to your right and click on the "Donate" button under "Donation to Treatment Travel." 

Long Term: 

• We are hoping we will be able to continue with non-stemcell chemo killer treatments for as long as we can.  This could be a year, two years, or more. 
• We will be balancing killing the Lymphoma with being gentle with my blood cells. The tricky part will be to treat the HL but not let my red blood cells go too low. This might be easy or difficult, we won't know until we start this first treatment.
• An Allo-transplant has always been in the far off distance for me as the ultimate last option for my Lymphoma.  I have wanted to exhaust ALL options for my HL before jumping into that boat.  An Allo (donor cell transplant) at this time will now be on the radar.  We will be doing our research this summer and preparing as much as we can with information, cancer facilities, medical teams, and clinical trials.  We want to be prepared, informed, and educated.  
• The Allo can potentially treat and cure both my HL and MDS.  It would give me new bone marrow (a new healthy immune system), and rid this body of disease.  However, it is a risky procedure that has concerning mortality rate, and I've watched many other friends still relapse after this long, grueling, procedure that is months to years of recovery. 
• There will come a point when my cells can no longer handle chemotherapy, a point when my red cells may not recover during treatment.  We do not have a clear idea when this day will come, but when it does this will signal that we have to being prepping for the allo-transplant. Hopefully it is not for a few more years, but we will be ready no matter when it comes. 

So, my friends.  I realize that this is an overwhelming amount of information for all of you to read.  As stated before, it has been difficult to write as I do not want to alarm anyone.  For now, we continue just as we did before the diagnosis.  Ultimately, the diagnosis does not change our path or course of treatment it just gives us some limitations and pieces of information to help us as we move forward.

----

Lots of people at this point in time when there are bumps in the road or a new challenge ask me: What can I do? And this time -- I have an answer.  Think about being a stem cell/bone marrow donor.  Being a donor is not an invasive process at all. When you donate, it is literally just like taking blood.  There is no surgery, no one digs into your bones, no one punctures your bone to get into your bone marrow.  It is nothing like that at all.  You literally, will be giving blood -- and a machine will separate your stem cells from your blood. That is it! So, think about this. It could potentially save my life, or someone else's.

Register online here:

http://marrow.org/Home.aspx

Easy as one, two three.  If you read this blog, and are healthy. I ask you to please, consider registering.  When/if you do, I'd love to hear about it in the comments section.  Let's start a small, "B movement." for donors if we can.

----

Tomorrow I meet with O'connor and team to begin to discuss new treatment protocol of SAHA.  Our hope is little to no side effects, strong red blood cells, and an April filled with beautiful sunshine.  And we will move slowly, never hurry, and continue on.


Today I'm going to leave you all with a small grateful list. I write one everyday.
1. Sunshine
2. Tylenol and pain medication
3. New Smoothie Recipes
4. My Cousins, I love my cousins
5. Poetry, more specifically today, Charles Bukowski.

Sending so much love to you and yours,
B.

Transplant Meetings & Flight Donations

Rich and I are planning an informative allo-transplant meeting at the best transplant facility in the world.  We want to do some research, become more informed with allo (donor) transplants, and familiarize ourselves with the types of transplants and the protocols associated with them.  We want to stay ahead of the game, dot our I's and cross our T's when it comes to the future.  To do this thoroughly we need to go to the Fred Hutchinson Cancer Research Center in Seattle, Washington.

We are hoping to make this trip in mid to late June and are looking for the amazing kindness of strangers and friends to possibly donate two round trip tickets/their frequent flyer miles, from Newark to Seattle this summer.  If you cannot donate an entire flight, but would like to help out in someway when we do go to Seattle, feel free to click on the paypal account to your right. (scroll down the page, and look to the right of the blog, where you see "Donations to Treatment Travel" and click on the big yellow button that says DONATE!)  Every penny helps -- trust me.

If you know of anyone, or you yourself could possibly consider donating.
Please email me at:  RebekahFurey@mac.com

We unfortunately will not be able to book flights for three more weeks due to figuring out work and treatment schedules.  But we are hoping to figure out the logistics ahead of time.

Also, if you have been treated at the Hutch for an allo-transplant, I would love to personally hear from you.  Just a small email (email address above) would be incredible, as I would really appreciate anyone who could share personal experience.

I thank you in advance everyone, those who send their love, positive energy, and so much more.  And to those who even consider or think about this donation, I sincerely cannot even begin to thank you for your generosity, huge heart, and the kindness that lays within you.

Sending Love,
B

For those who relapsed after an Auto-SCT or are Refractory Hodgkin's Lymphoma Patients:

This post is for any individual who has relapsed after an auto-stem cell transplant or has refractory Hodgkin's Lymphoma.  I have also attached it to the top tool bar of the blog so you are able to access it at any given time.  I hope this helps.

-----

I am Refractory (ABVD, BEACOPP and other first line treatments are not working)/I Relapsed after Transplant: What Next?

It has been an absolute honor and incredible struggle to be part of the Hodgkin's Refractory Community.  The souls I have met and crossed paths with have changed my life dramatically; however, living with this disease on a daily basis is not the easiest of lifestyles.

Due to creating so many relationships with other Hodgkin's Lymphoma Patients, it has come to our (the HL commuinty) attention that there is not enough information or guidance when a Hodgkin's patient relapses after an auto-transplant.  Since Hodgkin's disease is rare to begin with, and the cure rate is so high there are a small population of us who unfortunately do relapse.  Therefore the next steps after an auto-transplant are crucial to your body, your survival rate, and your mental health.  

Most general oncologists, although they are very well educated may not be well-versed in relapsed/refractory HL due to it's rarity.  In turn, they may or may not be aware of various options for their patient.  When you relapse and you are under a general oncologist, he or she can only provide you treatment that your specific hospital provides.  Therefore, your next steps are critical to receive the best treatment for your specific disease.

I feel so fortunate that other Refractory HLers reached out to me during my time of relapse, and educated me on  how to make the best choices despite my circumstances.  I felt it was only necessary to do the same for others...

Steps to take if you are refractory and or you have relapsed after Transplant: 

Be aware that you have many options.  And options give us hope for the future.  These next steps are difficult, but trust me, they are doable.  There are many of us out in the HL community who live long lives being treated with clinical trials or receive an allo-transplant and are alive today.

Review where you are located, who is treating you, and ask yourself these questions

• Am I being treated by a lymphoma specialist?
• Has my oncologist treated relapsed Hodgkin's Lymphoma before? Has he/she treated MORE than five patients?
• Am I being treated at a major cancer facility?
• Can my oncologist offer me other options besides an allo-transplant? 
• Have you sent you files elsewhere and received a second opinion? 

If your answers are no, this needs to change for your next set of treatments.  Refractory HL is a specific and unique disease, unlike the normal HL treatment protocols.  It requires a tailored treatment for your individual disease and only professionals with experience treating refractory HL should care for your disease, no exceptions. (No exceptions meaning, you need to put aside finances, health insurance, time, and be willing to travel  to a specialist if you want a longer survival rate).

Go see the top specialists for Refractory HL in the country.  This is in your best interest if you have relapsed after an auto-transplant to distinguish a short and long term plan.  Call and consult with Dr. Anas Younes or Dr. Owen O'connor. They are both able to offer multiple options of clinical trials and discuss different transplant options, as well as their medical opinion of which track you should choose determined by your individuals disease.  Be your own advocate, your cancer is serious but with tailored treatment you can be okay.  This means, even if you can not manage a flight for a consult, email Dr. Younes or Dr. O'connor.  When you email them include: Name, Location, Treatment History (hospital locations and oncologists you were treated by). Be short and to the point, but pack it with as much helpful information for these professionals to help you.

• Dr. Anas Younes

         Memorial Sloan Kettering Cancer Center

         New York, NY

         New Patients Phone#: 646-497-9137

         General Phone#: 212-639-7715 

• Dr. Owen O'connor
  The Center for Lymphoid Malignancies
  
  Oncology Nurse Practitioner
  The Center for Lymphoid Malignancies
  51 West 51st Street, Suite 200
  New York, NY 10019
  Phone #: 212-326-5720
  Fax #: 212-326-5725
  Email: oo2130@mail.cumc.columbia.edu

Be aware that the next FDA approved drug used for Refractory HL is SGN-35 also known as Adcetris. And there are other options... Most major cancer facilities and lymphoma specialists should have this form of treatment.  There are many individuals who have reached remissions with this treatment, or utililized it to bridge them to an allo-transplant, or received this drug for managed treatment.  Either way, it is a successful drug and it should be on your radar if you have relapsed or are refractory.  

• EBV+ Clinical Trial: Ask your oncologist to test your tumor block for  EBV+ tumors/Epstein Barr Virus positive tumors (not your blood, your actual tumor block).  You can do this by calling pathology yourself and requesting the test.  If you have an EBV+ tumor, you might want to consider before all else a non-toxic clinical trial first.  Read more on that trial here oh and here. 

• Revlimid: Many Refractory HLers are seeing positive results from this drug, normally used for Myeloma patients 

• SGN-35 + Bendamustine: Combination used in several clinical trials that are happening in the U.S. (Go to www.clinicaltrials.gov and use the search engine by putting in "Refractory Hodgkin's Lymphoma)

*Click Here to view a current list of open Refractory HL clinical trials.   For you to do more searches, keep in mind what phase these treatments are on. Phase I, II, or III. (The higher the phase, provides a higher form of research). 

Do not make a quick treatment decision.  There is always time for a second opinion. Educate yourself.  Above all, remember there is always time for a second opinion.   SGN-35/Adcetris may be your first option; however, you most likely will be faced with the decision if SGN-35 does not put you into remission.  Will you want to pursue an allo-transplant, which has a chance of a cure but has high risks OR maintain your disease through managed care such as various clinical trials that are on the horizon?  Both options have pros and cons and it is critical that you ask your oncology team difficult questions to make the most informed decision for yourself.  Either way, collect information from you oncology team, seek out second and third opinions, and weigh all of your options.  

It is a very personal decision, and only you know what will be best for you.  Please remember everyone's Refractory HL disease is different some of us have more aggressive HL, others are chemo-sensitive but very refractory (disease responds but continues to come back after treatment), and others disease never goes away but is not very aggressive.  Due to YOUR individual disease, a lymphoma specialist, especially the two above will be the best doctors to determine what route: clinical trial vs allo-transplant you should be treated with. 

• I encourage you to read some of the following on this topic.  
• Written by Alison, mother of Adrienne: Cure vs. Management
• Research clinical trials around the country/world for Refractory HL at: clinical trials.
• Visit other educated Refractory Lymphoma patients on the Refractory Facebook Group and Hodgkin's Forum. 
• If thinking about an allo-transplant research articles such as this one, oh and this one.

Ask Hard questions. This is your life. Ask those hard questions, even if it is difficult to hear. You are putting your life in your specialists hands. When you are faced with an allo-transplant or a clinical trial.  Remember to ask your specialist the following:

• For those facing an allo:

• How many relapsed/refractory Hodkgin's Lymphoma patients have you treated?
• How many of those patients have achieved a remission? A five year remission?
• Discuss GvHD: How do you treat it? How many of your patients experienced Grade 3 or 4 GvHD? 
• What is the percentage or mortality or survival rate of those treated with allo-transplant? 
• How many patients have reached a remission and have low to little GvHD that you have treated? 
• Discuss side effects, ALL of them. Even those that are 'rare.'
• Will this prevent/exclude me from receiving other treatments?

• When faced with a clinical trial:
• What phase trial is this? (one through four, four being the safest). 
• How many relapsed refractory HLers have enrolled in this trial?
• How many of those HLers responded? Partial Remission? Complete Remission? 
• What are the side effects? How will we manage these side effects?
• What is the mortality or survival rate?
• Will this prevent/exclude me from receiving other treatments?

Utilize resources available to receive the best treatment you deserve.  Do you have financial constraints and can not pay for a plane ticket, pay for lodging, food, act? 

• Visit Corporate Angels, they will fly you for free. 
• Stay at Hope Lodge, a free facility for Cancer Patients in New York City.
• Reach out to your Leukemia and Lymphoma Chapter for financial support.

Please remember it is possible to live with this illness for a majority of Refractory HLers.  It is your job as a patient or caregiver to seek out the best medical treatment, be willing to travel and ask your team difficult questions to receive specific treatment for you or your family member, friend, ect.

Above all, remember that with options there is hope, and there are many, many options for all of us. 

Sending love and tons of light to you,

B. 

I need you.

Actually, if you want to get literal, Ms. Hillary St. Pierre , needs you. In fact, she is a really tough cookie, and probably doesn't need anyone. But, I'm asking you, for me.

I need your help, for Ms. Hillary.

Isn't she a cutie?

So, Ms. Hillary, is a spitfire of a woman. She's twenty six. Has a beautiful son. And, as far as being a Hodgkin's patient, has undergone almost everything possible, for standard treatment. And here's the part, where I need my loyal, supporters to help. Hillary, although, being the independent, beautiful, stubborn, woman she is. Hil Just underwent an allo-transplant at Dana Farber. Her second transplant within a year. Personally, I can't even imagine. One transplant, is all my body could ever handle.

Unfortunately, her one hundred day scan, was not a positive one. After her allo-transplant, (stem cells from a donor), it appears that the cancer has returned, once again. Hillary is in no way, giving up. She's looking for other holistic treatments, diets, and other paths of treatments to keep that beautiful smile of her's going. But, just as you've all watched me, after a failed transplant. You know the heartbreak, and pain this kind of scan can bring upon someone. Their family, and friends.

It is utterly, heart-wrenching. And, I can't even imagine how I would feel after two transplant.

So, what do I need from you?

I have always been overwlemed with the amount of support, I receive on my blog. E-mails, and phone calls. I get. No matter what news comes my way. Therefore, If you care about me. I need you to utilize that support, and share it with Hillary. She is going through more than ANYone should, let alone, at the age of twenty six, with a family.

So, instead of leaving me comments, or e-mailing me, or sending positive vibes to me at this time. I ask you to focus your loving, incredibly beautiful, thoughts, smiles, love, and support to Hillary. She needs you. And even if she won't admit it -- cause she is as stubborn as I am ;) I'M telling you. I need it. I need you, to support, someone. The way you support me.

Commenting on her blog,
Click HERE, to access Hillary's blog.

or if you'd like to send something more personal..

her e-mail is:
hillaryst_pierre@hotmail.com
or
hill.stpierre@gmail.com


I have full faith, that Hillary has tons of supporters in her own network. But, in my mind, there is no such thing -- as having too many supporters, in your corner, when facing this kind of battle.

In advance, I thank you, thank you, thank you. For your love.

<3 B

I'm ready to talk about it...

Just to preface this note, I've been somewhat emotional the last few days. Something, I hardly admit to myself let alone my support group. But, I need to write, and I need support. More than normal lately. So, I'm reaching out, I guess. And it's always been difficult for me, to do this. So, if you are not in a good spot, emotionally to read some upsetting things. click the nice red X at the top of your screen. And, I'm guessing by the end of the week, I will have another 'peppy bekah post.'

----
Last year was one of the first times, I felt, the pain of losing someone to cancer. I mean, we all feel connected in a way when someone we 'know' dies of this disease. But, Sarah was different, Sarah was close to my heart. A friend of mine who I connected to, on a Hodgkin's forum. Sarah passed away, just shy of a year ago. And, I still have yet to really grieve over her spirit, and who she was. And, I miss her, dearly. My heart, still hurts. And a part of me is never sure, if I will ever be able to heal these wounds. She was, an amazing, amazing person. And it was the first time, in a while, that it hit me.

(and here's the selfish part). It hit me that even, the really good, the really beautiful-spirited and kind hearted, the most wonderful people in the world. They die. They die, unfairly. They die, in pain. Sarah had hodgkin's, and relapsed, just as I have... she even had a bit more remission time between ABVD chemo and transplant. But this amazing, this beautiful woman, who would almost lay her life down for anyone, and support anyone, she passed away last year. And it hit me. Hard. Because, no one should die of this disease -- but above all, I believed that our spirits let us rise above. Do not get me wrong, it carried Sarah far, she was a warrior, she fell in love with an amazing partner, and made amazing connections, and I am so jealous of her travels and the life she accomplished while she was here. But a part of me, the day she passed, realized, how unfair life really was. And it still hurts. God, it hurts.

Second, this summer as most of you know was very rough for me during transplant. And I had the opportunity to connect with another transplanter, my age, around the Philly area. My friend, Scott. I can tell you right now, Scott was totally different than me, and Sarah. He felt as though he had a right to bitch and moan about the disease. And boy he did. ;) The timing worked out perfect for us. I had a transplant in May, and his was in June. Thus, when I got out, and had restrictions Scott would visit, and then once he headed in, I had recouped enough to go to his house, and be with him and his family.

Scott and I didn't really agree with a lot of things. He would make me watch the cheesiest romantic comedies, and stupid comedies. I think I even watched a movie with Jim Carey in it -- and you all know how I feel about him. But, we had a common bond. We were young. Going through transplant. While the rest of the world, was living. We were trying to survive. And it was nice, to have someone at that time, physically present in my life. We also discussed what would happen if our cancer's came back after the transplant, what our thoughts were on fighting, on life, on Greece, we even made a bet who would get married first. Put 100 dollars down on it.

A lot of people weren't surprised, that I found someone in the area to connect to-- most of you know I have dear, dear friends who are also individuals who have been through transplant around the globe. But, to spend a summer with someone, physically watching you two go through the same thing. It was a different connection. Neither is stronger than the other, it is just, different. It was nice to be able to be next to someone, not say anything, and know. Just know, what the other was going through - without any explanaition.

Scott and I had just talked about when I was coming home for Thanksgiving. Home has always been a hard place for me to be. Since all of my previous treatments were at Upenn. To say the least, Scott just made it easier to be there. Even though we didn't share all the same views on life and love and cancer. It was a relief, knowing, I could drive a half hour to his house, and see him, on the holidays. At least that is what we planned.

Just as my cancer returned in the early fall, Scott's did as well. Scott decided to do different treatment than clinical trials, right away. And after talking with him only a few days before in early November, about seeing him for most of the week for Thanksgiving. He passed away due to an infection from chemo the second week of November.

And just, as I miss Sarah. I miss Scott.
And the reality, has set in again. That no one is invincible. That people are in pain. That people die. of this. And, it is hard. It is so hard. To watch. And then, to try to keep going.

I agree, that most of the time, I try to find the silver lining. I do not believe all of illness or sickness will result in death, pain, and loss. But, another part of me is very, very tired. Someone once told me, I shouldn't get close to other cancer patients. That inevitably someone will pass away, and it will change me.

And it has. But, I would never go back and change my relationships, at all. I cared for these two individuals. I think of Sarah often, and for the life of me, I'm completely torn up that I never got to give Scott a hug goodbye. But, it has also taught me, a really difficult lesson.

Pain and death and heartache, can happen to really good, really good people.
And if it could happen to Scott, and it can happen to Sarah.
With time, it can easily happen with me.

And that's something that we all, need to start, accepting.
Today, i'm just really. really. struggling. And I just wonder, if I'm strong enough..
for all of this.

-
Bekah

Regen

Recently, I've been captivated by a young woman by the name of Selma Meerbaum-Eisinger. Selma was born in Romania (now Ukraine). She was this frizzy haired, freckled nosed, young woman who started writing poetry at fifteen, during the Holocaust. At Sixteen, her and her family were sent to a labor camp in Ukraine, called Michailowka. In which she died, within the camp at age 18.

The preface of this specific book (Harvest of Blossoms), describes Selma, the person she was. The writing she created, the sweet young-love, in which she dedicated most of her poetry to. And, how her writing survived, the labor camp, was passed through friends hands, from Tel Aviv, and eventually was descovered by a small German Publishing House. Another young life, cut short, but her words, thoughts, beauty for the world, even with all of its misery can be found within almost each of her poems.

Although many words touch me, it has been a difficult week or two, for some of my favorite people. Who are in the cancer trenches, themeselves. This week, a few friends including Adrienne, were taken off the MGCD0103 clinical trial.

Another, Hodgkin's all0-transplanter, Eric, recently is struggling with not being able to produce bone marrow. Which means, more chemo and treatment for him. Both individuals, and moms are incredibly strong, and I believe will take steps they need to continue both Adrienne and Eric's steps to manage their situations. But, I share their frustration watching both young adults fighting for their lives... in some form.

And lastly, a dear, young friend of mine who I became close with during this summer while we both entered transplant at Upenn, Scott Reeder, at age 28, passed away this week due to sudden complications after his cancer returned for the third time. And, a part of me, has yet to even accept this news..

Beautiful people, whom I care for dearly, are suffering. And when I come to these points, to these weeks, in which life does not seem fair. In which, I feel as though, we've all fought, enough. Because, in truth we have. In which, I want all of these individuals' pain, and worry, and anxiety, to subside. I usually turn to someone. Not for answers, but maybe... for hope.

To another frizzy haired girl, with freckles, who articulately expresses, what I wish I could send, with my love, to all of you.

The rain has slowly and softly made its way through Boston this week, and will continue through the weekend, so, I found this poem very fitting.

Rain.
regen.

You walk. And suddenly the pavement's wet
and suddenly the green of the trees is new,
and a smell like that of burnt hay hits you in the face,
which, hot and pain, eagerly looked forward to the rain.

The grasses, which all dusty, tired, and weak,
already have bent down to meet the ground,
joyously see the swallow
flying near and suddenly seem filed with pride.

And you walk on.
And you walk on.
Walk lonely and alone
and know not whether you should laugh or cry.

And here and there, some rays of sun,
which shine - as if the rain were none of their concern.

- Selma Meerbaum-Eisinger

Fighting cancer, struggling with relationships, losing friends, stressed with future plans, with finances, with life, in general. We all have our ups and downs. The important thing to know though, is, no matter how much rain. No matter how much pain, Selma was able to see life, the way I want to. She was able to see those sun rays...in nature, in herself, in her friends, in life.


And my hope is, while I'm still here....




I continue to see and embrace those rays too.

Sending Love,

B