Grieving

I've been grieving and writing and grieving all week.  I'm not sure why this scan and bone marrow biopsy appears to be so different but it holds a lot of weight on my heart for a few reasons.

I think about my life often and reflect.  I think about how much I have accomplished in almost thirty years of living.  That my bucket list that I created when I was first diagnosed has been fully met, and even before.  I was a teacher.  I played college basketball.  I traveled to Greece, I completed my Masters Degree, I counseled children of domestic violence and sexual abuse (if only for a year, I did it), I fell in love with a great man and continue to build a life with him (not on my bucket list but what a great added bonus! I'm sure he thinks so as well ;)).  I've built some of the best relationships I've ever had in my life, my friendships and my relationships with my family are strong and unwavering and I found the strength to let those that were toxic fall by the wayside.  I went to a place I never thought I'd travel to -- Hawaii.  I snorkeled.  I hiked a mountain in a national park (the great Mt. Rainer).  I traveled to the Northwest. I've lived in Jacksonville, Fl, Boston (several times), Doylestown, PA, and Montclair, NJ.  Some of these things are not even on my bucket list but were found along the way, and I am proud of my accomplishments.  If anything, I feel that I have squeezed more into the last seven years than most could have in their life.  I feel lucky, I feel grateful.  I have a beautiful life besides these horrid diseases that have decided to live in my body and because of that, I grieve.

When faced with more treatment, or a risky treatment such as a bone marrow transplant your thought process goes in two different places, even though there is a lot of gray area.  Let me back up for a second, the allo-transplant that we've all been talking about has a very high mortality rate.  Unfortunately there is a 30% chance of cure, a 30% chance of not surviving, and a 30% chance of surviving but relapsing.  In between these factors there is grey area.  Graft verse Host Disease is a huge threat to quality of life (when donor cells attack the host body), it can be a whole other disease on top of the cancer that can destroy the host body, it can be at different levels but totally demolish a quality of life.  There's a change of not surviving.  There's a chance of coming out of transplant and relapsing.  There are just a lot of scary, scary things to think of... when being faced with all of these treatment choices.

So, I've been grieving.  The reality and the weight of my future treatment decisions makes my heart ache over my beautiful life.  The life I have attempted so hard to create for myself personally and professionally, and although I know that I've checked off a lot of boxes on this bucket list -- I want more.  I want more out of this life, I want to create another bucket list -- a longer one, a more diverse one.  I want to continue the foundations I've built on my other list.  I want more.

But the scary this is, we're not guaranteed.  In our society most of us feel entitled to live til we're 80.  We feel that we have a right to reach that age, and those that aren't touched by trauma, illness, or death in general do not have to think about this.  I know, because before I was diagnosed with my kidney disease and cancer, I didn't think of dying.  I didn't think of my own mortality.  I didn't reflect on how many more years I have or how much I should try to fit into my life because you never know.... you never know.  

But now, especially when facing such a risky procedure or the option of one, who knows what the future will hold for me.  So the weekend before scans it only make sense to grieve over my life, I'm allowing myself to do so.  I have one amazing life, with amazing people, and amazing things.  I don't want to lose it. I want to build on it. Wouldn't you?

We go into these scans having no idea what they will hold.  My last scans were in March with nodes reaching from 4 to 6 cms.  Too large for my liking. That was after we discontinued Revlimid.  After two months of SAHA at a subclinical dose, my team does not feel as though this has made a huge difference.  Therefore, when I arrived back from Seattle we upped my dose to 300mgs (a normal dose), which unfortunately this dose did not cooperate with my body and major side effects ensued.  Now we face this scan with only a very small list of options left in O's thoughts, and an even smaller list of options if the bone marrow biopsy continues to result a deterioration of my bone marrow.

As I said, I grieve.  I grieve over my current life and I grieve over possibly the lack of quality of life for my future or lack of future.  At the moment I'm feeling fine, but we really have no idea what the results will hold or even what the future holds at this point.  Personally, I've never felt this anxious or nervous about scans before and truly appreciate the love, support, and understanding of everyone just listening to my fears, thoughts, and ramblings.

As always, here's to hopefully still having a list of options.
We'll know more from Dr. O on Monday.



Bekah

Cancer is not always pretty: What to Expect Tuesday

So we are officially back from Seattle, and as always we don't have all the clear cut answers we want.  Therefore, we are going in this Monday, July 15th, for a PET/CT scan and another bone marrow biopsy.  A bone marrow biopsy is probably one of the most painful procedures that you can have as a cancer patient and having two within a few month period is not my cup of tea.  But it has to happen, so we we will be at Dr. O's on Monday for a very, very long day of tests and planning.  We will not have all the results that day, but some.

On top of that, I'm also still on a small dose of prednisone which gives me very full chipmunk cheeks.  Something that I really struggle with since my kidney disease in 2002, when I was on high dose prednisone.  If anyone has been on it, they know it makes you VERY emotional, leaves you with a moon face, thinning of hair, and a bunch of other lovely side effects.

So between the pain of the bone marrow biopsy, the emotions of the test results, and being on prednisone I'm still hoping and planning to go to my first Fundraising event this Tuesday at The Other Side, in Doylestown on Tuesday, July 16th.

I'm not sure what kind of shape I'll be in but for those who are coming, I ask you to give me lovely air kisses instead of huge hugs, since the bone marrow biopsy is in my lower left back, and just take into account that I am so, so grateful for all of you coming, I just need some space due to the pain I'll be in on Tuesday.

We'll have clearer answers with some things coming up in the next week, but for now, I hope to see you on Tuesday at the Fundraising event.  Click here for information, continue those donations for my transplant fund here. And I hope to see the rest of you and your gentle hands ;) on Tuesday!

Make sure you bring cash as we will have a few raffles and want you to win some prizes.
I'll also leave you with some beautiful pictures that we took hiking on Mt. Rainer while we were in Seattle.

Love,
Bekah

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!

The man behind the woman: Caregivers (part three)

I met Rich almost two and half years ago, and I swear from the first day we met he has made me laugh every single day.  Most people say they knew the instant they saw the person (I pretty much did), but this was something different -- I finally learned two and half years ago not only how to fall in love again, but what it was like to feel soul-shaking laughter.  How to choose to cherish moments and not be so fixated, serious, neurotic, type A about so many things.  I like to think he had something huge to do with that, I tend to think he had everything to do with it (and on top of it, still make my knees weak).

A lot of people credit the warrior, but in fact it is these caregivers that give us strength to move forward.    To carry on.  To keep going.  Rich, my other half, my partner, the man who makes my soul stir with laughter is one of the very big reasons I am still here, still smiling, and having the quality of life I have today.  He came in knowing, knowing that when he walked into my story there was cancer.  I'm not sure how many men could have that strength -- or be that crazy ;)

It's so hard to describe in words what this man has done for me over the last few years, but there has been a definite shift in my well-being, my soul, my heart, and how I view the world through the lenses that I so love to see through these days.  I wake up knowing I get to have adventures, explore, and play.  I never used to know what those things were... I never used to be able to see the humor or joke in this disease, this lifestyle, or how to have fun while fighting this illness.  This man has not only modeled it for me, without having any experience, but has guided me hand in hand through one of the most difficult years of my life (hopefully THE most difficult year of my life).

From last June to this June, when Rich and I look over the calendar, we have had only three weeks (not counting this last month of normalcy) in which I was not hooked up to an IV bag, in a doctors office, hospitalized, or bedridden for part of a week.  It has been a brutal year, and yet, our love grows like roots of a tree into the ground of this life and continues to deepen, strengthen, and become more solid.

When people speak of their relationships and moments they fall in love, it is usually of romantic getaways, champagne and dinner, fancy attire, or time alone somewhere remote.  I have some moments such as these pieces of normalcy, but the ones that I truly cherish are ones of advocacy, support, companionship, and intimacy on levels I never knew existed in a hospital room (and get your minds out of the gutter people!) ;) The times I am most proud of our relationship and our bond is when I see him hovering over me in an ER telling the nurse that it's "too many sticks, you'll have to figure something out." Or the first time we went away to a Texas treatment, and we had more fun on that trip than most vacations I had ever been on, due to company, due to food, due to all of him. Or the times he knows when to give me space after I've had too long of a day with clinic, doctors, nurses, physical therapy, and life.  And knows exactly when to step in when I'm about to have some anxiety, tears, and my fear of the unknown gets the best of me.

These are the times, sadly and wonderfully, I fall, deeply, madly, more in love with one of my greatest caregivers.  These are the times when the man behind the woman helps the woman to continue to move, to live, love, laugh, breathe, and suck the marrow out of life more than I ever have.  This year has been brutal, but telling. Difficult but affirming.  Frighting but loving.  In so many ways the juxtaposition is so beautiful and yet, so heartbreaking.  To find someone, to have a caregiver such as Rich, my partner, my love, and face this illness and now onto one of the most risky treatment procedures I could endure does not seem fair.  But what is these days?

What I know? What I know is that I am still incredibly lucky.  That on my darkest days, I still laugh through most of my tears and pain.  That I've taken trips and vacations for treatment and pleasure that I never would've experienced such highs because of a man who loves to walk five miles in flippers on hot lava rock, and would follow 50 different butterflies just to see where they would land.  I experience the essence of life everyday, and have for the last two and a half years because I have someone who has chosen to let me into his world, just as I have chosen to let him into mine (something he reminds me of everyday, that he feels grateful, he feels lucky, he feels this.)

But above all, what I feel is that I am part of a unit. a team. a pair. a bond. that not only enhances my life, but enhances the chances of so much beauty with life in general and in this painful scenario that we call cancer.  I may be the strong woman to many, but to me, there are many, many times that he is strength, however close or far behind me.

And oh, I am grateful for so much more that I could write novels upon novels.
But that is something that we, everyday, get to experience, share and keep for our own.  For now, I share this with all of you to show you that again, in so many ways I am grateful.
Today, and all days, I am grateful for my caregivers, and I am so grateful for him.


Sending Light and gratefulness,
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!

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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!)

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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

The Luckiest: Our Caregivers (part two)

When I say that I'm lucky,  I don't think people really grasp the luck that I have.  Although I have a life altering illness, a terminal one at that.  I've survived for over seven years. Seven fucking years... (excuse me, as I'm getting a little salty-mouthed in my day).  Who says that? I do.

But the luck doesn't come with my health -- give me a break. From my Minimal Change Disease of the Kidneys, to cancer, to MDS.  Good lord, I've been dealt a shitty hand with health.  But with people? My life? My stamina, the love that surrounds me? I'm the luckiest.  (Ironically as Ben Folds plays "The Luckiest" on my spotify as I write).  But truly, between my silent warriors, and the ones I'm about to write about in my next few blog posts, no one could ever comprehend the true grace, brilliance, kindness, and generosity that not only my family but complete strangers (yes all of you), have contributed to my healing, to my passion, to my will to keep breathing even in the depths of such pain.

It's an honor some days, to know that people are inspired, or derive some kind of will knowing that there is someone out there who has lived for seven years with Hodgkin's.  I know, because I watched it happen when I looked up to the pioneers of this disease, Alese and Adrienne -- the women who showed all of us.  That this is possible.

But I defer, I'm here today to write about my insanely generous Aunt B and Uncle J.  My family, the Rosan's have quietly stepped into my life after I have parted ways from a relationship with my biological father.  There was never an easy way to reconnect with my family on my father's side, but once I was diagnosed with my HL, The Rosan's broke down all the emotional walls.  They broke down the barricades, and everything else that I had constructed to possibly keep that part of my family at a distance -- and destroyed it.  They demolished it.  Instead, they gave me love, they gave me stability, they gave me comfort, they showed me what love was, real, true, raw, gritty, love that does not take no for an answer.  And for seven years, they've been modeling and showing it to me.  And there are not any words that could ever justify how incredibly, sincerely, thankful I am for these two wonderful people.

My uncle has shown me what it means to be a man in my life.  He has stepped in as a father figure in so many ways I can't even list them.  From supporting me emotionally through this hell of a disease, to being at my Master's graduation, with my Aunt B telling him that they always want to help me in anyway possible.  They are two of the most outstanding people, and they do so much -- not just for me, for their children, their grandchildren, complete strangers.  They are the complete essence of the hebrew saying Tikkon Olom "we are here to better the world."  They have shown me, how I want to grow, how I should achieve my goals, wants and desires.  And these two people are some of my greatest caregivers.

Just writing this small passage makes my eyes shimmer a bit with tears because between my silent warriors (my mothers), and these two individuals, I am truly the luckiest woman in the world.  I have more love, support, guidance, praise, and belief in me and my choices from these four people -- and that is more than most individuals could ever say or speak of.  I may have been dealt a shitty, shitty hand health wise, but in all other aspects of my life. I am so grateful. I am so, deeply, sincerely grateful for the people who choose to surround themselves in my presence.  Just as if my mothers were not in my life, if it weren't for my Uncle J and Aunt B.  I would not be here -- I guarantee it.  I wouldn't be here, sitting in my beautiful apartment, having a graduate degree, breathing in life, smiling and thinking how fucking lucky I am.  I am the luckiest.

Sending so much light,

B.

My silent warriors: Our Caregivers (part one)

I have attempted numerous times to write this post.  Everything I write never seems to justify how much our caregivers do for us, or what their roles are whether they be our parent, our partner, our sibling, or even just a good friend.  What I do know is they are earth angels.  They are what (if there ever was a god up there) what god intended the best of the best and most genuine, helpful, kind, strong, beautiful people to look like.  And, I, and so many other cancer warriors are surrounded by them daily.

The one thing I really dislike though about our caregivers is that they never, ever get the credit they deserve.  I realize we are here fighting for our lives, but I assure you my friends, I would not be here writing these words to you without my moms, Darlene and Diane, my partner, Rich, and my Uncle and Aunt, Jay and Bob.  These are people that reach down to the bottom of their souls, and when they have nothing left -- they dig, and give me more.  They give me more to keep living, and somehow, I keep breathing.

For example.  Last week when we were in the ER for over twenty four hours.  My mother, who thoroughly enjoys her sleep.  Just sat upright for over a days time, just to watch me, to make sure no one touched me or accessed me or fought with me, or did ANYthing to me (as we heard of knives being in other patients pockets if they wouldn't be moved soon enough.)  She protected me, as she always does, did and I know until she's here, she will.  For years, my mothers have pushed aside their personal and professional freedom and lives to help me recover, year after year, from our days in the transplant ward a straight 25 days of in patient that doesn't even tough the inpatient ICE days in the hospital.  Everyday, every night, Diane or my mother would be by my side.  Diane would make rice pudding and other forms of food I could easily ease down my throat, my mother would form relationships with me and my nurses, to make sure we received what we needed.  We were a team, they were and are my advocates. I live, due to their choices, the times they told a nurse "no, she's allergic to that" or "no, you can only access her port, after five sticks it's TOO much."  or basically "no you're insane if you think you're giving her that drug."  Or the times, that we would plead for a push of benadryl, and only our favorite nurse would assist us ad make sure we'd receive it.  The times, where they'd sleep on the hospital floor one year during the holidays, when our floor had no heat and it was below freezing out, where they gave me their coats, and shivered for days so I wouldn't die. Literally die, of pneumonia.  Or the times they would let me cry and cry and cry, and wonder when this part would pass... They are my silent warriors.  They would give up their lives for me, and I know that.  They will drop their work, their friends, their sanity, and unfortunately even their own health to attend doctors appointments for me. To question, to challenge, to agree, to game plan and have three different plans of attack.  They are the ones that fight behind the scenes, the ones who may not be in my body to feel the pain -- but are on the outside doing everything imaginable to stop it.  They are my everyday heroes. The women who tell me that I can do it, I can make it, I can push forward, that I am stronger than I think -- and somehow in those moments they are right.

They are the women, the caregivers who told me I could keep studying and pursuing my masters degree. They are the women who told me that a strong enough man would fall in love with me, because I am amazing.  They are the women who, with me, take nothing for granted every single day.  Because they are my silent warriors.  The ones that hardly any one of you hears or sees; however, they are everything.  I only hope and pray (or send positive vibes, whatever I do these days) that there are many cancer warriors who have such amazing caregivers, women, moms, best friends that know if I'm not ready to give up -- neither are they, and for seven years.... we have continually put one foot in front of the other, as a team.  Sometimes, I am so incredibly grateful for, every single day of my life.

These are my silent warriors. Only two out of five of them.

But they are the only reason I am alive today. And though there is nothing I can do to ever thank or repay them in the future, I can only hope, by my continued breath, sometimes that will be enough.

I just needed the world, for today, to know that.

Sending so much love to you, and your silent warriors.

xoxo,
Bekah

...and exhale.

Every time I quietly rebound, even if it is just enough to go food shopping for one day, I am always in awe of this tiny body of mine.  I'm incredibly shocked how strong the human body is in general. And I am so grateful this has been the case this week.

Just last week my kidneys were in shut down mode and I could not get out of bed, nor hardly walk to the bathroom, or have enough energy to shower.  This time last week, I couldn't move. The poison I was feeding my body was obviously a little too much.  It's amazing what a few days can do.

Yesterday and today have just been life changing.  Although I strive for so much balance in my life, this disease can make it incredibly difficult; as at times, my body feels so bi-polar.  One day I am cursing up at the heavens to allow me to have a pain free hour, literally just one hour.  Praying that I would give anything to not feel discomfort, pain, nausea, fevers, ect.  Then the next day, my legs carry me through my apartment, to whole foods, and on a walk in the park, with my normal chronic pain, but nothing compared to what I went through last week.

Today my house is now filled with a scented candle from my mother, hydrangeas, a fridge full of fresh food, and in my jewelry box lays a new beautiful, leafed-necklace I received from my partner, almost a token of victory after being released form the hospital.  One which made me cry like an infant, showing how grateful and vulnerable I am for these last forty eight hours.

My body is euphoric when it comes to this point of relief.  A point without drugs, without fevers, without hardly any medication to speak of.  And just like that, from feeling like the shit on the bottom of someone's dirty boots, my body, even if it is only for a few days, quietly, softly, rebounds.  

Normally, during these moments I call everyone I know and plan outings.  This round, I am stepping out of the ring and have decided I need to take whatever time I do have and focus on rebuilding and not setting myself up for failure. I tend to plan, only to cancel, which leaves me mentally exhausted and disappointed.  Finally, I think I am learning.

I write this post with the utmost hesitancy, since I know in a matter of days we could switch to another level of health.  If my body continues to stay strong and counts stable, then I am free until the 22nd where I will be meeting with O to discuss next steps.  But for today, the sun is shinning, I am eating, the house smells of beautiful scents, and I am prepping to cook a dinner for myself for the first time in weeks.

I've finally taken a breath, even if it is just for yesterday, today and hopefully tomorrow.  Quietly, I am cheering, as I can no longer describe the essence of how good it feels to look at that pool again, be sitting on the steps, and just breathing.  Maybe someday, I will get to the other side.

But for today, I'm just thankful to be above water and exhale. 

Here's to small victories. 

xoxo,

B.  

Drowning

I wish I could say I reached the other side of the pool.  If anything, last week I felt as though I was drowning. After a small throat infection last week, I was prescribed a slew of antibiotics and antifungals as well as an increased dose of my SAHA (chemotherapy).

It was the perfect storm.  Resulting in the inability to keep food down, loss of weight, dehydration, and intense pain and discomfort.

My counts bottomed out, my kidneys shut down, and I was admitted to the hospital for five days with a creatinine level of over two.  Basic kidney failure.

In addition, there were no beds available at the hospital when I was admitted, so I had a day and a half in hell in an NYC ER.  Pure hell.

Rich and my mother were beside me the entire time, as the ER refused to access my port, and I feared for my health in general as I was surrounded by infections, individuals vomiting, and all other forms of unsanitary levels around me.

Finally after I was given a bed in the oncology ward, we literally drowned my kidneys with fluids.  After five days, my kidneys returned to normal and I came home late Saturday.

I'm home.  I've been off SAHA and all treatments all week.

The renal failure and dehydration were due to the SAHA.   Tomorrow I go in for blood work, and pray that I have a week to recover before we discuss any more form of treatment.  Although today was an okay day -- I am so tired.

At this point I'm just straining for a breath.  Let's hope for a boring week.

B.

In the Blue

I'm a Pisces, by sign and as both my Irish-Catholic Nan and Jewish Bubba would say -- by heart.  The identified sign of a Pisces are two fish.  Though the description of my sign bodes well with my personality, it is the Pisces element of water, the ocean, and finding relief in these pools of relaxation that I find most congruent.  I am always so grateful looking back on my childhood and remembering specific moments of relaxation and tranquility surrounded by what I considered pools of heaven.

I grew up with my brother, and my nine cousins on the Jersey Shore every summer at our grandparents tiny bungalow near the ocean.  My other earlier memories of holding my breath for just a few seconds were at my Uncle Jay and Aunt Bobbie's pool.  Both the men on my father's side were once life guards, and with my mother's family rolling around in the ocean even before they came out of the womb -- I was bread to swim, and I loved it.  But my very first water experience was with my mother at a babies YMCA course.  She tells me that while all the babies were screaming, I just looked up and kept smiling and cooing at her.  And it just continues on, at three months I spent my toes in and out of the Atlantic Ocean.  My family told me they started bringing me into the water at my uncle's as early as one year.  I started swimming on my own at five or six.  And I started training to swim my entire uncle's pool without taking one breath at age seven, accomplishing the goal at age nine.  The water was my home, being under water was my haven.  Now, even at age twenty- nine one of my greatest loves (even though I've only been a few times) is snorkeling.  Being under the water, and not hearing nor thinking about what is above.  Just disappearing and watching the beauty, floating, life is effortless in the blue. Effortless, when you can breathe... and stay under at the same time.

However, as much as water is my haven, it's only when you are able to stay under when snorkeling and have your breathing tube, is it truly relaxing.  Holding your breath in any other way, is straining.

Last June, after our beautiful trip to Hawaii I started becoming really ill again for the first time in a year.    The cancer started progressing but we weren't sure if it was cancer, or a kidney infection -- or both.  It was a summer of pure hell. I don't think I made it to the beach twice, if that.  I was in bed, in a hospital, or at Dr. O's.  It took us all summer to differentiate the kidney infection, plus cancer progression.  If you believe in signs, phases or cycles, last year felt like one as before I fell ill I lost my grandfather (of those eleven grandchildren that adored him and flocked to him at the Jersey Shore).   I lost Lily, my companion of fourteen years,  I lost my summer, and this fall my grandmother after losing her husband she lost her home: her beach bungalow, her independence, and our future summers, due to Hurricane Sandy.

Following my lost summer, and Hurricane Sandy, Revlimid prevented me from hardly any quality of life. I had amazing moments this year.  Unfortunately, I can count the weeks I was out of bed, out of the hospital, or out of Dr. O's office on one hand.  Between one of my college friend's weddings and Florida which were the two highlights of my year since last June.  I am fortunate to have those memories.  I am fortunate I was able to not have shingles, not be hospitalized, not be hooked up to fluids or blood for those few weeks.  But the rest, since last June I've been grasping for breath.  Straining.

After the blows of Revlimid, and the diagnosis of MDS, and now onto a new treatment that will hopefully help manage the MDS and chip away at the cancer.  It's once again been a rough start for several reasons.  A few weeks ago I began having classic "B" Hodgkin's symptoms (fevers, night sweats, chills, over and over).  These symptoms make you feel as though you've run marathon after marathon and are drained only to gear up for the next night of symptoms and hope that you are at least able to sleep a few hours between changing, showering, and breathing through the pain and fevers.  To give Dr. O credit where it is due, he did ask me to start at 400 mgs of SAHA to begin this treatment.  I refused knowing I am the side effect queen.  Unfortunately, I began at 100 mgs which has been an uphill battle since.  Every week I started a dose, the "B" symptoms have subsided.  Then, on a Wednesday or Thursday they rage back even worse than the last time.  Thus, we up the dose to 200mgs. Now we are up to 400 mgs, a normal dose -- it has been one night and nothing has subsided yet but I am predicting it will soon. In hindsight, Dr. O and I joked about how maybe next time I should listen to a world renown oncologist, instead of a twenty-nine year old with a masters degree in counseling.  And, I will in the future -- for a majority of the time ;). Something wonderful I am holding onto is that my ESR/SED rate before the SAHA while I was off treatment was 110, now with only a light dose of the SAHA it has come down to 80.  We will take that -- small improvements.

My timeline starts in June, not January this year like most people.  I start from June because that's when I started holding my breath.  I feel like I am seven again, trying to get to the other side of my Uncle Jay's pool.  Loving my life, loving the water I am in but determined to get to the other side.  Each time I think I am close to holding my breath and reaching the other side, my side of relief, breath, love, calm and still.  My side of no more pain, fevers, night sweats, canceling plans, losing weight, taking ten pills a day.  I have been struggling, straining.. grasping to stay under water, between the losses, disease progression, change of treatments, thinking... we will get there. I will be able to release.  It will all come soon.  However, with most of these thoughts I've come to breath too soon, I haven't reached any relief. In fact, I've swam back to the beginning and started the process all over again, week by week, or month by month.

But now,  I can see the other side of the pool, just as I did on those sweet summer days in the cool water where the colored tiled walls of the outskirts of the pool gave signal to reaching the perimeter.  This time, I really think I might touch it.  I just have to hold my breath a bit longer.  I have to keep pushing forward, moving, swimming towards it.  Then I'll be able to take my breath and I can once again enjoy the amazingness around me, the effortlessness that was here last June.  Then, I can embrace the rebound, the rebuild, the strong breath that I am so desperately yearning for... and a new cycle this June.

Let's just hope it all comes soon.

Another June of rebuilding, summer after transplant in 2008. 

Lastly: I will definitely have a 'thank you donation' post very soon, as I track all of the wonderful, amazing donors that are going to make Seattle and few other transplant research visits possible this summer.  I can not thank you enough for your generosity and continued support and confidence in me as I continue this fight.  As always, every penny helps and if you would like to contribute, just click on the 'donate' button over to the right hand side of the blog under the 'Labels' section.

Sending love and sunshine,

B.

A Ramble today, an update this week.

Today was a shitty day. Everyone is allowed to have those, one of those sad, draining, exhausting, just ready for tomorrow, kind of days.  A lot of these days, I just write drafts and never post them for people to read.  However, more and more individuals write me and ask me how can I be so 'positive' all the time?  Which, do not get me wrong -- I love looking through life's lenses with a silver lining.  But, if you take a twenty nine year old Refractory Hodgkin's patient, diagnose her with MDS, then rip her guts out by watching a bombing happen in one of her home towns she lived in for six years, where her heart has resided forever... anyone is allowed to have one of those days.  And, I am far from positive twenty four seven.  We are all human.

This week I had planned to visit my friends from Wheelock College (located in Boston), at one of their houses in CT.  We had been planning this gathering for months and I was incredibly excited.  Earlier in the week, I went and visited my family, got a lovely hair cut and caught up with my favorite stylist.  And then, Thursday hit.  Raging fevers of 102.8/9, night sweats where we had to change sheets over and over again and midnight showers so I could sleep for more than one hour.  My cancer symptoms were raging.  So, O'connor and team upped my dose of 100mg SAHA (my first personal choice at a lower dose) to 200mg of SAHA.  Friday, and Saturday morning continued on this path, and finally... finally... Saturday late night, I found some relief.  Today, I literally just laid in bed, looking up at my ceiling thanking my lucky stars that I could breathe, that I wasn't drenched in wet clothing, that my body wasn't covered in beads of disgusting sweat, and that for the first time in days I could eat.   Today and the last few days were some shitty days.  There is nothing eloquent about it.  Tomorrow, we go in for blood work.  Tuesday we meet with O'connor, and most likely due to my MDS and teetering HGB and platelets from last week at only 100mgs, I will need some form of transfusion.  Fun.

This week will get better, it always does.  But this is a reality check, for those who think I only see pretty pink bows and the beautiful things in all the pain.  Most times, cancerville and now MDS world, are spent laying in bed, showering away fevers, taking temperatures, force-feeding food into your mouth, muscles and bones filled with chronic pain, and all over body nausea.  So, although I have nothing wonderful to write today... I'm sharing with you, my first reaction to my MDS diagnosis when I did not know or have any information, I just knew something was wrong, in early March.   Just remember, there are really really great, beautiful, wonderful days and I am always able to find something in each day to smile about -- but some days, are covered in shit.

----
When I was eighteen I packed my bags and an overly wide smile to move to Boston where I attended undergraduate school for elementary education.  I had planned this move since I was nine, when my family visited Harvard Square and I fell in love with New England, the people, being near the ocean, the crisp fall leaves and the possibilities that it could lead me towards.  I entered college wanting to leave some really ugly pieces of my child hood and my home town behind me.  It was new, and I felt on top of the world.

When I (and my entire family) huffed it up there from Bucks County, PA to move me into the dorms,  I ran across the quad, in front of Peabody hall, towards my new roommate: Jen. Luckily she did the same as we encircled our arms around each other and jumped like naive (and happily-so) euphoric little school girls that just found their best friend and did not have a care in the world.  Not only did we find friendship within each other, and other life-long amazing friends too.  But we were passionate and had played basketball since childhood; in turn, we joined the DIII (ever losing) team at our school.  Two months into the season and the first semester of school our coach held our practice outside, in the cold rain.  We were to run as I recall a mile or so around the soccer fields, in the mud, with cold rain coating our bodies, and chilling us to the bone.

One week later, and weird, off the wall symptoms that only my college friends could understand, I was diagnosed with my first life threatening disease: MCD, Minimal Change of the Kidney.  My grandmother swears that my kidneys stopped functioning on their own because of that basketball practice.  To this day, my Nan still curses the ground that my old basketball coach walks on.

Two years later, hospitalizations, meds, high dose prednisone and cyclosporin, attending my first two years of college in Boston, I somehow hit a remission.  It was out of the blue and no one knew why I was cured or why all of a sudden my kidneys started working again.  It amazed me how much I changed from that young woman who ran across the quad to the week after the most grueling practice.  I also (in hindsight) never received at PET/CT scan.

Two years later, at the age of twenty one I moved (again) after graduation.  This time, I had my eyes set on Florida.  I grew up near the Jersey shore with my cousins every summer.  My Pop showed me (his first of eleven grandchildren) how to ride a bike on the Lavallete boardwalk.  My Nan taught me how the sea, the salt water, the sand healed.  The sun and the beach were calling me and so was my first teaching job.  I was an enthusiastic, less naive, but eager young woman.  I boxed up my 200 children's books I had been hoarding for years, my bathing suits, lesson plans, and an infectious smile as I arrived in Jacksonville, FL.  Here, I was the youngest teacher in a large school that pushed major literacy and curriculum boundaries, exposed my students to as many forms of culture, literature, and even holiday cheer (being one of the two Jewish teachers) in the school.  I spent my days in the classrooms, and weekends building fires on the beach, and throwing footballs in the ocean.  I overworked myself for every kid in my classroom, changing up my roles with a flip of a coin from teacher to counselor and even more -- and I loved and ate up every single fucking second of it.

This was the life I had planned.  I left behind my ugly childhood in Bucks County, Pa.  I left behind my MCD in Boston, and now Florida welcomed me with open arms.  During holiday break after celebrating getting through half of my first year of teaching I visited my uncle.  I pointed out a small bump on my collar bone.  Two weeks later I was diagnosed with Hodgkin's Lymphoma.  The last lesson I taught was about the human body, and how some of our cells aren't good cells and that's why we need tylenol or treatment (or in my case seven years of chemotherapy).  I left my 200 books, my 28 students, and my heart.  I never entered another classroom as a teacher again.

Seven years later, I am still fighting the same disease but a lot has changed.  My smile remains, however I'm pretty sure my nativity unfortunately has faded with the years of relapses.  With time, as you face a chronic/terminal disease you begin to understand how incredibly short this life is.  This past week I truly reflected back on my life thinking "What would I want to do that I really haven't done yet?" And to be honest, I have packed in so much within the last seven years that I really, truly know that I have accomplished (Masters Degree, Counseling Internship, Teaching, Healthy Relationships, Yoga, Traveling) so much, so so much.  I am extremely proud of myself for never taking one day for granted.  Which is something I will always pride myself in, because, you never know what is around the corner.

(I know this next part might be difficult to read, but please remember: We are all stronger than we think, and it will be okay).

At twenty eight I moved with my partner to Montclair, New Jersey.  We packed up my life in Bucks County, PA, this time, leaving behind good friends, family, amazing grad school friends, a beautiful apartment, memories of a Masters Graduation, a counseling internship, clients, an incredibly accomplished life.  My partner and I welcomed Montclair with open arms, being near my cousins and grandmother.  New professional opportunities, closer to my medical team, a gorgeous apartment and a shorter commute for my love.  Life was again and still does move forward, it always will (trust me).  Three months after moving and unpacking our new lives, small red flags began to rise.  No longer being naive, a bone marrow biopsy was requested.  One week later I was diagnosed with early, low-risk stage of Myelodysplastic Syndrome (MDS).

We now begin to strategize treatments for the future around HL and MDS, and begin to research paths for an allo transplant in the distance future.  This hasn't changed everything as far as a treatment plan, it just limits a lot of treatments.  We do not have as many options, and an allo will now be on our radar.

Like always, we take one step at a time.  However, this time as I look at myself without a smile, and too much medical information for any non-med student to know at twenty nine, I find myself yearning for those days... those days of nativity and youth.  I find myself thinking, jesus, I must've really won the jackpot: three life threatening diseases before the age of thirty. Lucky me.

Yeah, we're allowed to have shitty days.

------


Sending Light,
B.

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.

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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.

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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