Let's get this party started!

Round Five of chemo (Brentruximab and Bendamustine) came and went, so did the nulesta shot, bone pain, a cold, and now I am sitting comfortably in my Uncle's Florida Beach house, recovering from one of my (hopefully) last rounds of chemo, and counting my blessings.

With a remission under our belts, and this past round of chemotherapy, we are one step closer towards my cure: the allo transplant.  We are aiming for Mid-April or Mid-May for this treatment.

So the big question -- what can you do to help!? 

I have an answer for you :)

Cancer is expensive people!  So, one of my life lines, Karen R., has set up yet another fundraiser, but this one is online and you get to shop and end up looking fabulous! A win-win for all.  Stella and Dot is a gorgeous company composed of jewelry, accessories, bags, and beautiful BLING! And they want to help.

From now until April 9th you can purchase ANY item from their site and 25% of the proceeds will be donated to my transplant fund! By following this link: http://www.stelladot.com/ts/w8cx5, and purchasing the perfect piece of jewelry or hand bag, you'll look fabulous, I'll be cured, and life will be good.

To ensure that we receive your donation make sure the Stella & Dot welcome page has the following message below. It should read: Let's get together for some fashion and fun, and shopping for a cause, shop until April 9th, 2014. 

and on the side bar you will see a 

message from Karen…

Let's come together for a fun Ladies Night Out

for a Great Cause!

We will be styled and shop the NEW Spring Collection from Stella & Dot

While we raise money to help support Rebekah Furey

for her allo stem cell transplant that will take place this Spring.

Once you see these messages, proceed to shop for some bling!! 
Again, here is the link -- feel free to copy/paste it/email it/post it to friends.

 http://www.stelladot.com/ts/w8cx5 

As always, if you'd rather just make a direct donation you can simply donate to my tax deductible Transplant Fund by clicking here.  All proceeds will fulfill medical bills, co-pays, prescription costs, transportation, and our daily bills; since my partner will be out of work and taking on a full-time care-giving roll for these next 3-6 months of my treatment and recovery.

So, let's get this party started -- you with your fab jewelry and bags,
and me with my amazing cure :)

Have fun shopping! And please feel free to post, email, and/or share my blog with this information or any of the links I've provided in this post to your friends and family.  We need all the help we can get!

Love,
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!

My Mother Effing (30th!) Birthday

Today is my thirtieth birthday.  It has been a hellish year. A year that just kicked my ass and everyones who supports me. This year I've been hospitalized more in one year than I have most of my years (that I've been ill) combined.  I was diagnosed with MDS. Too many warriors I loved passed away. We decided I'd move into an allo transplant and made the difficult decision to have this form of treatment in NYC at Columbia with Dr. Owen O'connor and Dr. Jasmine Zain.  We lost friends, jobs, hope of treatments, bone marrow, nerve feeling, hair, for a period of time I lost myself, my positivity, and my hope for a future.  It has been a fall down-kick your ass-stomp on you till you can't move-bekah fell off the face of the earth (no communication) kind of year.

But…

Yes, here comes the but --

At the same time.  I am still here. I AM STILL HERE. And this year, I have a shot of a cure.

Truth be told, I'm not huge fan of my birthday.  I tend to get a little down for some reason, thinking, reflecting, letting feelings fly because the reality is I have been a cancer warrior (and have been treated) all throughout my twenties -- and there are three ways to look at that fact.  I can be depressed and allow my emotions to swallow me whole because I have been sick since I was twenty one OR I can be grateful that I am still here unlike some of my fellow warriors who I can't help but think they should be facing this milestone with me this year or a few years that follow (Adrienne, Anne, Eric).  OR I can be both.  I never realized I could feel both until the last few years -- but I can.

And that's where I am this week, between these worlds.  There are hours, even days, that envelope me in sadness.  Tears that talk of the past, the struggle, the adversity, the treatments, the loss.  But what follows these tears are reminders which lead to how grateful I am to still be here no matter how hard this can be.  Because we all know if it wasn't hard.  It wouldn't be worth it. And good god, it is.

This morning I received a bouquet of beautiful flowers from Anne's parents. Anne, who is no longer with us and with each milestone I continue to think -- she should be here doing this, but instead her energy surrounds me. As do many warriors… and I realize how lucky I am, how fortunate I am, how my story is not even close to being complete.

And even though I would never wish cancer on anyone, or believe that cancer is a gift (whoever says that -- sorry it's complete bullshit), I do believe I have found the most amazing silver linings in the world due to this disease:

• I'm turning thirty today.  Thirty.  At twenty three when I completed my first transplant I was told by my Upenn oncologists that I would not reach the age of twenty five, maybe twenty six.  Yet, here I am.  Having relationships with some of the most courageous warriors and medical teams (yes you: O, Ellen, Laura, Kathleen, Emily, Renee and Tabitha!) in the world. You name a state or country and I can tell you an individual or family who has faced cancer and how they've impacted my soul.  For that, I am so, so fortunate.

• I was faced with the challenge of leaving the classroom, teaching, and my entire professional life (what I thought was my greatest love), which led me to the greatest profession of all, counseling psychology.  A place and environment in which I've met the bravest and kindest children, parents of these children, co-workers, supervisors, classmates and have challenged myself intellectually and emotionally.  These individuals have left a huge imprint on my heart and mind.  These people, this field is something I may not have ventured into unless I was forced out of the classroom -- for this, I am grateful that I was able to find my niche before the age of thirty.  I found my place in the world in which I can make a difference, and I can't wait to get back to all of it after this allo-transplant.

• I found and strengthened relationships with the loves of my life.  My friends and partner have become my family, cheering section, support, caregivers, and so much more.  Those who have stuck with me through this journey are my earth angels.  They give me strength when my well is dry.  They love me on my worst days.  Between my loves from Boston/Wheelock, to my original Dtown fam, my bests (Meliss, Kare, Kate), Chestnut Hill women, my HL family, and all of you. You have sent me candles, books, food, light, your friendship, his love and constant support, goofy gifts, CAKE, stunning cards, messages, tea, chocolate, voice mails, texts, flowers, and love, love, love… so much of it.  I never realized how much I could have in my life, but goodness, I have so much and am so grateful. 

• I love my crazy family even more. My moms. my brother. my sister. my cousins. my aunts and uncles, my grandmother, my partner's family. My relationships have changed so much, our priorities have changed so much, and when I find myself falling -- there is always, ALWAYS someone there to catch me. Celebrate with me. Love me. Support me. And walk this path with me, on days I can barely walk myself.  

I may have had this disease for almost a decade, but I have lived.  I was given the privilege to live this life, however difficult or challenging, however calming or euphoric.  I was blessed to still be here, to prove those oncologists wrong… to live, to feel, to love.  And this year, to possibly fight for a cure.  I am still here on my mother effing thirtieth birthday.  And for that I am thankful.

Here's to 30 -- being the best yet….

….and most of all

Here's to receiving a cure.

B!

-------

Next PET/CT Scan: March 17th

Next Chemo: March 18th and 19th

Allo-Stem Cell Transplant: Mid April or Mid May pending on scan.

**If you want to help me receive this cure

click here to donate 10 dollars or more to my transplant fund. 

It would be the most amazing birthday gift in the world :)

Chemo Four - Complete.

Hello all, Chemo number 4 is complete and now we wait for counts to fall!  My plateletes and HGB (red blood cells) have needed support through this chemo, so now our chemo schedule has shifted.

This week we infused on Wednesday February 18th and Thursday February 19th.
We will head into get platelets today, and blood next week.

For now, we will receive chemo: this past week -- will need food and lots of love this weekend to replenish my body and mind.  Individuals have been asking how they can send food.  There are several ways.  You can order gift cards from:

1) We order our groceries from DirectFresh.com to be delivered to our door: https://www.freshdirect.com/index.jsp

2) Frank Anthonies: http://www.yelp.com/biz/frank-anthonys-verona
(subs, italians, delivery)

3) Chanti: http://www.chatnionline.com
(Indian, delivery)

4) Spice II: http://www.spiceii.net
(Thai, Delivery)

5.) Casapiquin: http://www.casapiquin.net
(Mexican, Delivery)

We will list more and more restaurants as time comes…

We have also made a final decision that transplant will now occur in NYC with Dr. O'connor and Dr. Jasmine Zain, my team here.  It is emotionally, financially, and just easier all around with support.  Therefore, Seattle is out of the mix; however, we will still need finances to fund us through this three to six month process, as I will need caregivers during this entire time.  This is all the brain power I have now, I will update more come the weekend/early next week.

Thanks for the support and cheering, we need it!

Next round of scheduled chemo is on March 12th and 13th.  We are still desperate for candles, books, and food… so send 'em our way!

Love and Light,
B.

Plan of Attack

The month of hell is complete -- and we all survived (somehow).  No major reactions except fevers.  So many people sharing their love, gifts, food, light, with me.  It's been a difficult month but to see how many people are in my cheering section is just mind blowing.

So, what next?

This week I actually have off -- just blood work -- Wahoo!.  The main issue we're having right now is neuropathy, and swollen ankles.  I've fallen twice, and its extremely hard to walk (especially up stairs), and to open things.  I've lost all the the feeling in my toes, and it's moving up my calves at this point.  My fingertips are also completely numb.  I'm concerned.  This is a side effect of some drugs -- and years ago when I received SGN-35, I also had the same side effect.  It was one of the reasons why we stopped the drug.  So, we have to problem solve this issue.

Beside the neuropathy, Dr. O has decided we will now have chemo every three weeks.  These are the dates in case you want to drop off food these weeks, or send some positive vibes.

Infusion Dates: February 12th and 13th
March 5th and 6th
March 26th and 27th

There are two dates since we will be combining SGN-35 and Bendamustine.  I'm hoping the nueropathy won't worsen as infusions pass, it would be a horrible side effect not to be able to walk that well and we don't know if this will be permanent or not. However, I know we also need to look at the big picture, and as far as my life and energy goes I'm doing very well, so we cheer for that.  I have so much to be thankful for, especially this week without poison.  My body is loving the relief, loving it.

After these infusions, we hopefully head to transplant depending on scans and how my cancer is doing.  But that is for another day…

I can never thank you for all of your support, love, and positive vibes.  Again, I know I'm here because of the people and love that surround me, and for that I'm so grateful.

Love,
B.

All of you

This month has been awful yet wonderful.  I have received letters, candles, books galore and even lovely gifts that I don't deserve and a box of these beautiful chocolates from the Cavanaugh family that I don't even want to to touch because they are pieces of art.  I am so lucky and grateful in so many ways as the onslaught of chemo continues…

The best pieces of inspiration though have got to be your words.  Your love. Your light. You telling me I  can keep doing this, and as Charles says "A little bit of chocolate always helps."  We'll, yes it does sir!

As for cancer talk: The plan of attack now is to receive SGN-35 once a week pending my counts be well.  Plus Bendamustine on day 30 (end of the month).  There haven't been many reactions except for chemo fevers and major neuropathy (which we are all a bit nervous about -- losing feeling in my feet).  However, I'm trying to work my legs, and we're getting in home Physical Therapy starting next week.  Hopefully I will still have feeling in my legs by the time this is all over.  I guess it's the price you pay.

The good stuff:   My ESR, which has usually been indicative of my disease in the past reached an all time low of TWO this week.  This is brilliant and in many of our minds we're hoping it means the SGN-35, on a higher dose, is now working four years later.  I swear if it wasn't for my last charge nurse, Laura B -- I would've never allowed them to even infuse me with this drug.   But because of all of her notes from years ago, we all held our breath during this infusion, and she was right on the money, in so many ways.   I am so so grateful for women, nurses (Ellen, K, Em), PA's (Alex, Carrie).  The entire Six North floor and just all  of my medical staff in general.  I have resources that not many others have and on a good day, I'm able to see the light and have clarity in all of this.  I know how lucky I am…. how fortunate I am.  And I hope they all see that when I'm in the midst of hell.  

So we continue with SGN, ever week -- the last week of the month we add Bendamustine then I believe we will scan.  Transplant will most likely happen sooner than we all think (if I hit some form of remission), so if you do have pockets you want to open and not spend money on gifts which at this point we REALLY need the funds for Seattle.  Here is where you can go to donate: DONATE

Tomorrow I receive my infusion as it's been pushed back a day due to insurance.  I'll probably have chemo fevers and be out of it for the weekend, but one month of pure hell I think I can do with all of your support -- we've gotten this far in seven years haven't we? And it's mostly all of your doing.

Again, I can not thank you ENOUGH for all the goodies, letters, books, disctrations, love and light.  You make me move, you make me write, live, and breathe again when I can.  And I am so grateful for all of it.  

Love and light to all of you,

xoxox,

B. 

We did it.

We did it. Four days of inpatient, no big reactions this round the SGN+ Bendamustine actually worked.  We all held our breath, the entire nursing team, my oncology tream, my family.  But we did and it such a relief.   The one thing that has occurred though is I'm having a few fevers which I did have previouslsly when I received this treatment before, so right now I'm still in patient to make sure that everything is a-okay.  There's a part of of me that doesn't mind thought because this round of chemo went so smoothly, so smoothly in fact I slept right through it it.

I've been lucky too, my brother has come up to stay with me since Rich is still is still working full time and we're attempting to make sure I have a a caregiver with me at alll time,  as it it isn't easy being here trying to remember all of to he medications, getting food, and just having company…  I'm one very lucky girl..

Today we decide if they'll discharge me, as my next infusion will already be on Tuesday, so we'll see what the great O says.   I just wanted to thank all of of you for your love, light, and inspiration to continue one this path.   It isn't easy and it's so much more able and desirable when you have a  cheering section behind you.  So, I can't thank you all enough.  We will sees what the next week brings, but I will be sure to keep things update so people are aware of what is going on.    In addition people asking to visit; however, it the last thing I wasn't is get more sick so if you have even a a runny nose, its just not a a good idea for now.  

You can give a a call to me or Rich though and see if a a day is a a good day to visit as as I am open to seeing your beautiful faces.  

Alright, I believe all is all for now, will update soon.
Love you all,
xoxoxoxo
B.

Finally a bit of an an update.

It's been a a while, and I apologize just so much has gone on between different treatments -none have been working unfortunately, so the disease has continued to grow.  At this point between a thrush, an UTI, and in creased disease we've decided to admit me to the hospital and take care of everything.

At this point we are now attempting the Bendamustine +SGN35 Trial to attempt to get things under control.  The scary part about the SGN is that I was part of the phase ONE years ago, and had horrible, horrible reactions.  So we are preparing for the second portion of this trial, as an army.   O has done his research, from one of of my previous nurseses, care takers will be in place, and I'm finally on the north side of the floor for oncology medical (best nurses), opppososed to onc - surgery who hasn't seen these reactions.

We are truly hoping this trial will do the job, I'm no sure what else we have on the list have this one…. but it's leading up to the the allo-tranplant we are planning for.

So that is what we have for now.  I will write more again when I can,
Sending Love,
B.

still breathing

It's been a very difficult few months since we returned from Seattle.  Losing warriors (Alex, Jen, Karin) -- my heart has broken more than I thought possible, a deep depression, a new treatment with it's challenges.  We are looking for relief somewhere.

I hope we find it soon.

As always, thank you for all of your support.

Bekah

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.