Not a waste

Warning: Looong Post.

The last three days have been very informational. And, I feel as though I know my options fairly well right now. So, I will share my knowledge with all of you...

Here is what we're looking at:

One) Radiation is not an option right this second. The disease turns out is in my spleen, and a few nodes outside of my spleen. Radiation is primarily used for localized (in one spot - that's for Kate Hansen!) areas in the body. You can do complete radiation to the entire body, but we have other options before we pull out the Rads card. And, I'd like to explore those options before I hurt my good cells :) and bone marrow through radiation.

Two) The other option given to me is a min-allo transplant. A mini-allo transplant would be the same thing that I just went through as an auto transplant, except instead of receiving my OWN cells, I would receive a donor's cells. The issue with an allo transplant is, that it is much more risky. And, the aftermath could result in lots of complications (GVHD or even death). GVHD is Graft verse Host disease. And, it's honestly a horrible way to die. Basically the donor's cells do not recognize the host (me!) body. Therefore, instead of eating away just the cancer, it can eat away the good cells or organs too. The cure rate for a mini-allo is 10-15%. The chance of receiving GVHD is 15-20%. It's a scary thought, but still in the back of my head. And there are some great success stories out there (like Duane and Eric) who are both young men that are totally putting fear aside and going for their shot of a cure, because that was the right step for them. But a mini-allo takes a lot of effort, and the doctors (at least at Dana Farber) feel that I am not ready for this step, so soon after my transplant. Maybe in a year or two, if we run out of options, but not right now.

If you want to read more about transplant with donor cells and GVHD, you can here.

Three) Clinical Trials. (which it looks like my gut is telling me to do) There are lots of clinical trials out there at the moment. That could potentially put people, like me who have refractory (relapse within three months of remission), into small remissions (amounts of time where there is no disease). One especially, is almost being approved from the FDA (Federal Drug Association), and there has been lots of good feedback on it with minimal side effects.

This drug is called SGN-35

Fellow hodger: Zach is on the SGN-35 at the moment getting treatment at M.D. Anderson. Check out his story, and maybe even donate a little to him and Erin, they are trying to fly back and forth from their home to Houston every three weeks. Which can add up to be a lot of money.

The trial in itself though has had great results, but doesn't necessarily mean a 'cure,' AND, it might not even work. That's what clinical trials are - they are trials. But if it does work, I could be on it for months, even years. It might be a good step to buy me time, let my body build up. And see what else is out there in a year or two, or possibly attempt another transplant.

There is another clinical trial out as well called MGCD0103. This trial is taken orally in a pill form and has show reductions in disease as well.

Fellow Hodger: Adrienne is on this clinical trial at the moment. And although side effects are in her daily life, Adrienne is kicking butt in college and applying for her Master's degree come next fall.

However, with each clinical trial comes risks as well. Maybe not death, but maybe progression in diesease.

Four) The GND cocktail. Gemzar, Navelbine, Doxil. This cocktail is a drug that I could be on, at any time.Meaning, I could go on it now. I could wait and see what the clinical trial does, if it works - then it works. If it doesn't and my disease is getting somewhat out of control, we could put me on GND immediately to buy me more time. Or until I decide to go into transplant again.

Five) Roll over and die. okay, I'm sorry, I couldn't resist ;)

So, those are the options I am faced with at the moment. Believe it or not, I'm in very good spirits. I'm relaxed. For the first time in my life, I know what the future looks like, I know what I'm facing. And, I know what I have in me.

Mentally, I first faced my deepest fears last week.. when an individual asked me if it felt like I was 'wasting my time,' if I knew I would probably die in ten years or so. Or maybe sooner. But the truth is, we have no idea when our time will end. Is an 18 year old who gets in a car accident and dies - wasting their time? Is a 50 year old man who dies of a heart attack, who never had children, never found love, hardly contributed to the outside world - wasting their time? Is a six year old diagnosed with a rare blood disease, who passes away within a year, wasting their time on this earth?

no.

I am not here, wasting time.

Realistically, I could roll over, put the covers over my head, and give up, emotionally. And, no one would argue with me, if that is how I wanted to handle this. But, that is not me. And, I am here to be in the classroom. To teach children how to read. To cheer up survivors I meet in other hospitals, to be there for my family and friends, when needed. Toii defy the odds, over and over and over again. Because I have. That has been my life. To take something, so horrible, and so heartbreaking, and turn it somehow, into (dare I say it) somehow beautiful.

This, me, here... is not a waste.

And for now, that is what I'm going to hold on to. And some friends, who always seem to amaze me with their incredible, amazing support. Dare I say -- I am one of the luckiest people, to have individuals like this in my life, and Boston at my fingertips...

I still have a few more appointments in NY, and then we head back to PA next week. To make a final decision. As always, I will be keeping you all updated.

B!

Don't stick a fork in me, yet.

I am always, always, overwhelmed by the amount of love and support I receive from so many, across the country every time I receive bad news.

I feel as though I should realize by now, that this is how the people in my life are. I surround myself with the most beautiful, heartfelt, and sensitive souls in the world. To say that I'm lucky to have each of you would be an understatement. Because, I feel the love, so much, in everyday through emails, notes, phone calls, ect.

And I feel fortunate enough to know, that life is precious, and that this is truly the meaning of life. To make these connections, these relationships, and see the pureness of each person in my life and how I care for them, and they care for me. In times of hardship, I feel blessed to have such an army of supporters by my side. I'm not sure many people can say this. But I can.

As for my lovely title. I just want to clear up some misunderstandings that I've received in emails, comments, and phone calls. Although the disease is spreading and I would consider this incredibly alarming. There are still options out there for me, if I choose to do so. I appreciate the concern, how touched you all are, or at least express. And yes, the severity of the situation is pretty high up there. But, at the same time, I feel that there is a proper way to handle this kind of situation.

The proper way for me, is not ... running around like a chicken with its head cut off ;)

So, let's not freak out yet. okay? One step at a time. I will let you all know, when to completely be alarmed. I promise.

Now that the initial shock of cancer returning is in play, I have set up two appointments tomorrow at Upenn, and two at Dana Farber, and am hoping to have a third in New York. All with lymphoma specialists, and lymphoma radiologists. We are getting the best of the best to make sure we choose the right next step.

We can decide to go for radiation, or straight into a clinical trial. The difficult part about clinical trials is that they are still in the early stages of being approved by the FDA (Federal Drug Association); however, there are some really good ones out there that people are able to live normal lives, with small side effects, and are maintaining their diseases. There are also other ones that are more toxic, but have a higher chance of a possible remission. All in all, its A LOT to decide.

So, we will take this a day at a time.

First stop, is Upenn tomorrow. We'll gather information, then head to the next appointment, and the next. By the end of the week, I hope to have a plan of action.

Again, you all are absolutely wonderful. And I still, to this day, do not know what I did to deserve the outpour of support from every single one of you -- but, I will certainly take it.

All my Love,

B

Sweet, heartbreaking, tears..

There is no easy way to articulate this, except to be honest and blunt.

The transplant did not work; therefore, the PET scan from a month a go which showed two small nodes (possible lymphoma), has spread in my chest. And we are now looking at a fast spreading disease.

This will be the second relapse, and third cancer I will have to deal with. And, on every level that I believe that I still have some fight in me, I do believe I need to be realistic in this instance.

This week I am hoping to have radiology appointments set up in Philly, Boston, and NY (Columbia), to decide what specific form of radiation I should receive to slow the disease down. Radiation will last from five to six weeks. Which, will have some not so fun side effects. But at this point, we need to get the disease more under control.

In the 1960's Radiation was primarily used as a curative form of treatment for Hodgkin's. With individuals relapsing later with second cancers. It is possible, that radiation, could do the 'trick,' if it's done the right way. Or at least put me into a year or two remission. But this is all variable to how my body and my disease react. I have also had a friend who during radiation, their cancer has spread during this treatment. So, it is very difficult to 'hold on to hope,' at this point.

At this point, I do not see myself at an optimist or a pessimist, I am, what I am. I have always worked better, when I have all of the information in front of me. To make decisions. That being said, I need to know where I will be receiving radiology, what type, and where the best technology is to provide me with this care. Every detail, at this point, matters.

If I decided against any type of treatment, my time here, with all of you would be close to seven or eight months tops. That is not to sound harsh, or hurtful, it is just the reality of the matter.

With radiation, I could possibly hold on to a remission for a year or two. I'm not the kind of person to hold on to expiration dates, I've decided to not let that affect me in my decision making. What will be more of a factor is quality verst quantity.

I would rather a shorter life, filled, with good quality and less treatments.
Then a longer one, in which I was on more heavy chemotherapy (which would not present a cure), drugs, and deprived of seeing friends, family, and traveling.

I hope, all of you, can somehow be okay with the decisions I've already confirmed in my mind. And know, that I care deeply, for each and every one of you. Who you are. How you've come to me, in my life -- if it has been through meeting in Doylestown, girls in Boston, coworkers in Florida, Professors from Wheelock or Lesley, you, yourself or family member being a cancer warrior. You have touched me, in some way, some how. And I have drawn my strength, from all of you.

The bottom line is, very very bad things, can happen to exceptional people. I have watched it happen. I have seen, a few of the most beautiful souls, leave this earth, way too early. And that is not to say, I'm headed anywhere right this second. That is just to say, me and all of you -- have fought, tooth and nail for a cure. And realistically, it probably will not happen. So we have to now mold our thinking into not hoping for a cure. But hoping, to do what I want or need to do, with the time I have left. Whatever time that may be.

I, again, apologize for writing such heartbreaking news. It is never my intention to hurt or cause pain on anyone through this process. But, I at least owe all of you that -- the truth, the honesty, and to prepare all of you for what is in store.

I will pick back up on updating more often, to inform you on news of radiation, the location, technology, and if or what we would be looking at if i choose to do a clinical trial later on.

Why do the fingers 
  Of the little once beautiful lady 
  (sitting sewing at an open window 
  this fine morning) fly instead of dancing?  
  Are they possibly afraid 
  That life is running away 
  From them (I wonder) or 
  Isn't she aware that 
  Life (who never grows old) is 
  Always beautiful and that 
  Nobody beautiful ever hurries?

- e.e. cummings

<3 B

Be gentle to yourself

As many of you know, I've been struggling with what to do this year. Caught in a holding pattern until my next scan comes in, right about the time when school districts around me are beginning. I am in an impossible emotional and physical position. And have been incredibly hard on myself. To push, to be 'stronger,' to get healthier as fast as possible so I can finally get into a classroom.

Before this week, I saw it as a failure. As a goal that was not reached. I look around me and see peers of mine going into their second or third year teaching, and here I am. Barely made it out of my first year, with little hope of going into my second year at the moment. Why, when cancer survivors are finished treatment, why do we constantly try to compare ourselves to the healthy? To those who haven't experienced the horrid treatment that we've been through?

My thought process has always been - this is where I should be. I should be, in a classroom teaching in Florida. I should be, coaching on the side or tutoring hebrew. I should be taking on a full time job this September and start teaching. I should... Why are the expectations so high? Why do we set ourselves up for this? Because we want to be normal. Because we don't want to be seen as sick anymore, and because, realistically, we're grieving over a past life.

I have always set my standards incredibly high for myself. I did not take any time off when I was sick in college, I jumped back in the game of life last year a month after ABVD, and only two and a half months out of transplant, I moved to Boston, rebuilding my life. As fast as I can. I always thought this was a mature outlook. A job, being a workaholic, hardly having time for rest was my translation of being a responsible adult. Pushing yourself, doing it all on your own, and never asking for help. That was an adult.

The truth is, it can be, for most. And most likely, I will be forced into that position at some point soon. But for me, it doesn't need to be right this second. I have fought through everything that has come my way, as best as I can. With little to no recovery time between treatments. And, that has been my choice. No one is to blame but me.

However, this is the part where I have to realize, by being gentle with myself. Taking care of myself. After this horrible event. Does not mean I'm failing. Although a part of me still feels that way. That going to school plus a part time job, is failing. That I should have prepared more for interviews, that I should ignore the scan coming up and just go full force into the work force. That I should be stronger.

I should be stronger.

I should be... stronger.

I have to take a step or two back. And think, and remember, what I have just endured. It is true, that my peers are in their second or third years of teaching. But, I am not them. I did not just graduate college and begin my teaching career without any bumps in the road. I started my life, and a truck drove through it... twice. And although I am not asking for any exceptions, or excuses, on life. I do need time, to be gentle to myself. And I feel this is a lesson for everyone.

We continually try to set incredible expectations for ourselves. Which can be a positive and a negative. You will fulfill your goals, you will be successful. But if you push too hard, if you do not give yourself time to recover, if you beat yourself up for not being as 'strong,' as you thought you were. You are only carrying more weight on your back, you are carrying around negatives that aren't necessary. So therefore, a middle ground is needed. I keep telling myself and others, we can only do the best we can do. And that's it, period.

If I don't find myself in the classroom full time this year. I have to allow myself to be okay with that. It does not mean, I'm weak. It does not mean, I will never teach again. And it does not mean, I'm failing.

It just means, for right now, and right here,
I need to take time to breathe.

We all deserve that, at some point in our lives, don't we?

- B

Fork in the road

I had a wonderful lunch, with one of my professors from Lesley last week, Sarah. Although my days at the moment are definitely bi-polar. One day, I want to stay in bed with the covers over my head, the next I want to call everyone I love and tell them how much they mean to me. There was something, that has stuck with me from spending time with Sarah that really hit home.

She said something along the lines of, after you got sick Rebekah, I wasn't as hesitant about getting involved with people. (meaning students, other individuals, on a more personal basis).

It made me think. A lot. And made me truly appreciate the relationships I've created through work, and school. But, also made me realize. Some other things.

It seems when people get sick, friends and family have one of two reactions. One: They pull back, or cut you off. Or, they decide to get involved. In turn, as patients and survivors we have some of the initial instincts. We're scared, we don't know what is ahead of us. So, we pull back not wanting to get close with our old friends, or begin new friendships because -- we really don't know how much time we might have. Or if the treatment will work, at all.

So, when push comes to shove. A lot of people leave, and you as a patient, can possibly cut off some relationships as well (hoping not to hurt the people you love in the long run). When all of this movement happens, there are a few 'real' ties left. It's hard. And, I realize it's hard on both ends. Myself or you -- being a patient/survivor. And my friends and family, or yours, being on the opposing end of this shifting. Trying to figure out or attempt how to build, nuture, or create more relationships.

The bottom line we kinda think to ourselves is, at least from my standpoint is, what is the point? Why try to connect with people, new or old, when treatment might not work, when we might be on borrowed time? Why share ourselves with friends or strangers, if we only have a year or two left? Why not crawl into a hole, and not become close with anyone? Not love anyone? Why not, push people away? If there is no cure? Cut ties, if there is no future... why not?

In the grand scheme of things, I'm not sure if there is a point. Life is utterly unfair. The good, don't always get recognized and the evil aren't always punished. And at the end of the day, you have to ask yourself, if there even is a point...

At the beginning of last fall, I began my Masters degree in Literacy. Something, that is a true passion of mine. The class that has truly resonated and remains within me though, is Sarah's. During our first week of class, we created a collage. We were told to create something that tells the story of us, where we've come from, our passions, our lives, and what we bring into the classroom. Sarah went first, and described her life in detail. Some things she might not have shared with even a friend. But in front of 20 something grad students, she opened up. She got involved, she exposed herself, in a vulnerable and beautiful way.

And there I was, the following week. Deciding what parts of my life, I wanted to share. Hesitating for a week, of what to put on this collage -- my interesting family? my kidney disease? god, cancer? how my world was ripped apart, from me the day I left florida? It seems like an easy choice now. But at that moment, I had to decide. Should I expose myself? Be vulnerable infront of strangers? Or, do I take the easy way out. Put up my walls, and not let anyone in.

As women went in front of me the day we presented. I noticed something. The women, that exposed some of their most difficult times in their lives, not only took these obstacles and applied them in their classrooms. But, I felt... connected. I felt like I knew a part of them. And in turn, I wanted them to know a part of me. So, I did. I let go. I got to know these women, and they, definitely got to know me. And, in the process, I grew with some and became close with Sarah. Which is more than I could have asked for.

In turn, it brings me to another fork in the road. Here. and now. Limbo is not a fun waiting game. Everyday, brings a new thought, a new future, old memories of treatment. I am literally faced with two extremes from the outcome of this scan. A) a possibly long healthy life. or B) Cancer, possibly, forever. There is no handbook for this. And, as far as 20 somethings go -- not many out there have dealt with kidney treatment, as well as two rounds of cancer treatment all before the age of 25.

And some days, I do ask - truly, what is the point? So, I guess. To answer my own question. The point for me, at this very moment, is to get involved. There have been many people who have written me off completely, others that I've pushed away in the process of this illness. But what Sarah, and many others have shown me, is that its important. To get involved in others lives. To get to know people. To make connections. To TELL people you care about that you love them.

After this scan, I may be on borrowed time. In the end, truly none of us know how much time we have. But, realistically, I will probably have a better idea than most. And lots of things will change in my life. But, one, I know that I don't want to change. Is when the fork in the road comes to a head, that I take the path that leads to exposure. That leads to opening up. That leads to connecting with people. That gets me, involved with others.

Because you just have to know, there are truly, some beautiful, beautiful people out there. You just have to decide, which path, is better to walk down... for you.

- B

Inconclusive

Over the past four days I've received a lot of emails and phone calls.

Inconclusive? What do you mean inconclusive...

wait. So what happens if it's cancer?

So the transplant didn't work?

In short, we don't know. It's unfortunate. It's a little heartbreaking. And, to put in bluntly, and incredibly not-poetic in any fashion,
it sucks. But it is, what it is, and we have to deal with it.
So I will give you the facts. Because, that is all I have. No answers, at the moment. Just facts.

Once again, a PET scan measures the metabolic activity going on in your body. When things 'light up' it usually signals to the lovely oncologists that it's cancer. Although, we have wonderful technology and a great learning of science. We have to accept, that nothing is perfect. And that's where my PET scan falls under.

Inconclusive. not sure. gray area. unable to tell.

Two nodes lit up in my chest. This would usually mean, the transplant did not work, it is cancer, and we have to take the next steps -- whatever they may be. Treatment, or not. Accept it, and move on. However, this PET scan was not 'hot.' Meaning, when you have a PET scan you measure metabolic activity by SUV levels. It's all based off a scale. Usually numbers 3-11 are red flags for cancer.

My numbers were 2.4 and 2.6

This could mean these nodes are:

a) infected
b) reacting oddly from transplant, giving off a false positive PET scan
c) nothing at all

or

d) the beginning stages of my disease: cancer.

The thing is, we just don't know. I am incredibly humbled that people are worried, and are expressing their worries through asking even more questions. But the fact of the matter is, nothing is perfect, neither you, nor i, nor science. And, this PET scan is in a very gray area.

A lot of times in life, we want a beautiful happy ending. We want to wrap up things in a nice box, with a nice bow, and move on. Most, are lucky if life works this way. But for some, there can be quite a detour. I have been in a holding pattern for almost two years, fighting this disease and putting the rest of my life on hold. And this next month of waiting, doesn't really change that. I've been waiting. To move on.

But the world of limbo is not always a happy place. Caught inbetween, feeling healthy, the move, interviews, and wanting to move on to thinking of future tests, future treatments, possibly no treatment, and on borrowed time. There is no middle ground here, and the two options of cancer or no cancer are very extreme.

So, another scan will occur on August 21st. This scan will either show the nodes grew in size and 'hotness' or metabolic activity. Or, stay the same. Or, be gone. If they grow. It's cancer. If not, it sounds like I'll be cleared for another three months.

So, we wait. And in some ways, enjoy what we can. In every day. At least I attempt to.

Because, this could be absolutely nothing
or absolutely something.

for now, we just don't know...

All my love,

B

Today I miss: a world, when cancer was a word i hardly knew
Today I smile for: newly painted finger and toe nails



Today I am grateful for: Wullie Currie

Results

Inconclusive Results =

More scans, on August 21st.

So, we wait.

<3 B

Before the world has its way... a thank you, or two.

Before the results, come in tomorrow of weather or not this transplant was successful. I wanted to express my gratitude and thanks, to all of those who honestly put their heart and soul into me the last six months.

Treatment, and even this part of recovery has been somewhat surreal. I can't even quite put it into words, just that, I'm so very thankful, and still overwhelmed some days, that I'm here -- and walking around. When just a few months ago, I could hardly gather enough energy to sit up right in a hospital bed. The human body, and spirit are truly amazing. And I'm so thankful I had people in my life that felt MY life was worth their effort, through supporting me.

Realistically, there are tons and tons of people to thank. Between last years treatment and this, and a part of me hopes I get to write thank you notes to each and every one of you. But most likely, if you are reading this now -- you were a part of this process. YOU are why, I am still here, and smiling.

This will be somewhat geographical in order, if that makes sense:

First and foremost, my extended family. The Rosan's and the Furey's, my Uncle Jay and Aunt Bobbi, who led me in this direction of treatment, and the best care possible at Upenn, and also the emotional support and kick in the butt I needed to keep me going through the difficult patches of my treatments. And then, the Furey's -- on all ends, my grandparents for telling me I was beautiful, even on my roughest days, and visiting when they could. My Aunt Linda for supporting my mothers through this mess. And my cousins, for thinking of me.

The ones who financially, let me live: Sheila, Sarah, and Vicky (The Curley School, Lesley University, and Neptune Beach Elementary), These three women, and the collective institutions/schools I've worked/attended at, not only put together fundraisers for me, to pay for prescriptions, gas to and from Upenn, and other care, but sent an abundant amount of emotional support through cards, poetry, and their personal connections to make sure, I was still kickin ;) For these women, and the staff that work with them -- I thank you, so so much.

Those crazy kids in Boston: To the ones who packed me up, and unpacked me. The ones who listened to my morphined thoughts, who cheered me on when I cried, and who kicked my butt hard (Nik), when I wanted to give up. Nik, Kate, Josh, Lynn, Em, Am, Kare, Timbo, Man, Sarah, Brock. I could never even begin, to thank you all enough.

My forum Family: Good lord, without the knowledge of all of you. I would have been lost between the tests, treatment, and even recovery now. I believe I have followed the footsteps of the most incredible transplant warriors out there, between Sarah, Shannon, and Anne-Marie, to Wullie, D, Brian n Brian, Adrienne and Brandy. And the incredible daily support of Veronica, Jesse, Susan, Alison, Michelle, and so, so many others...You, my loves, have pushed me through. And shown me that I should be proud to be a survivor. That I AM proud, to be a survivor, among, all of you.

To be honest, this last group is a weird mix. Of people, who saved me at very crucial points of my treatment. To John, To Jen, To Sam, To Daphna, To Ham, and to Darrel. You have heard and seen my darkest days and thoughts, and yet, you still stood by me. On days, I thought I was broken, you each were there -- never caring what I looked like, or however beaten I sounded. You all, were there. Checking in, calling, emailing, doing whatever you could in your power to make sure I was still breathing. I will never, ever, be able to thank you enough. For your sensitivity to my needs, to just being able to listen. You six, have amazed me, and went above and beyond, the calls of friendship, and continue to do so.

And lastly, but most importantly, my beautiful family. For Jake and Aly, to be here for parts of their spring break, to care for the house and dogs -- while I was in the hospital. For my moms, my beautiful, beautiful mothers, who although drive me crazy most times ;) Gave up their jobs, their lives, their normalcy, to continue my life. For them forcing food down my throat, when, I refused, for them driving me to the ER, at the drop of a hat. For them, sleeping in reclining chairs for two straight weeks in the hospital, just to be near me. For them bugging nurses, doctors, and questioning everyone and everything, so I wouldn't have to worry about my care. For them, taking me in at twenty four, rearranging the house, the dogs, and their life. So I could have successful treatment. Without them and their strength, I assure you, I would not be here. And for that, I have never ever been more grateful to have anyone such as these women, in my life.

And lastly, to you -- if I have not mentioned your name. This blog, in many ways, has been an extended network. Your comments and love, shine through the screen to me. And on the days in which I felt most alone. You, were all there with me. Weather you sent a card, left a phone message, sent an email, ect. You were a part of this. And for that, I sincerely thank you.

Although cancer has been an incredibly heartbreaking and devastating time in my life. I have to state for the record, the outpour of support from those I have yet to meet face to face, or those who I haven't spoken to in years. Has truly been amazing. The kindness of strangers, coupled with my army of support of friends and family, truly lets me see the beauty within all of this pain. And for that, as well, I am grateful.

Heading into Upenn tomorrow,
which will determine if the transplant was successful.

Sending tons and tons of love,
to each and every one of you,

B

Reasons why I smile...

Sometimes, pictures are better than words.

My lovely scottish man, Wullie! Although we look old -- Wullie is only one year old and I am just about to hit three months (in transplant years!)

The last two weekends,
I've been able to lay in the sun,
on the beach with friends...it's been amazing.

Red sox... 'nough said :)

Fenway...

baseball and jane!

My partner in crime,
and the green monstah...

The girls!


College roomates..

My sweetest, loves.

and my other half... me and Jen!

These beautiful people are keeping me busy and smiling wide.
Hope all of YOU beautiful people are doing well.

Tons of Love,

B

Bittersweetness

I can't even begin to express my gratitude and appreciation, from the support you have all sent me through emails this week. It was, much, much needed. So, thank you.

After a week of getting settled, the move is finally done! There are still many boxes, things to be organized, and the apartment still isn't quite, 'bekah-fied' but it will get there. With time.

The last few days, I have realized a few things about myself. And although, this week has been somewhat of a painful process. From packing up my room in Doylestown, looking through the hundreds, literally, hundreds of 'get-well' cards, sorting through the lymphoma books I've collected the last two years... To, unpacking old pictures, lovely furniture, and a new life into my perfect one-bedroom apartment, in Boston. All in all, it has been an emotional process.

To say that the emotions after transplant, in addition to moving so soon after treatment are like a rollercoaster is certainly an understatement. In addition to this week being a huge moving week, I was able to spend time with two of my - favorite - people in the world, Wullie and Veronica. Wullie and Veronica have been two of the most supportive individuals, throughout my transplant. Sending me words of support, calling, telling me I was strong enough, through this entire process, sending pictures, and even as far as giving me my very own star, in the night sky. To see these two individuals face to face, was bittersweet, knowing the history that the three of us have traveled through in the transplant world. Once again, there is an unspoken bond between survivors, that I could never explain. But being in the presence of this amazingly stunning couple, made me feel understood. Made me feel, like bekah.

Anyway! You mesh all that together, plus some job interviews, catching up with tons of friends, and attempting to adjust as fast as possible to move, I will admit I have never wanted to cry and smile so much at the same time. I am so happy, yet so overwhelmed at the same time. But, I've realized over the last two years. That these emotions are not wrong, or inappropriate in any way. Before cancer, it was understood that nothing was worth crying about. That a smile is needed twenty-four-seven. That you block out your fears and anxiety.

But now, I've decided, that this, all of this, is reality. That seeing Wullie and Veronica (and John and Kelly!), moving, interviewing, putting one foot in front of the other, is something that tugs at my heart, in a painful and beautiful way. I once again, have the choice... I can either ignore my feelings and emotions, or work through them. And this time, I choose to work through them, embrace them, hold them, and be proud of them.

With all of these emotions flying around, I have also made another choice, to close this chapter of my life, and this blog. Although I will be working, and allowing myself to feel, recover, and find my new normal in Boston.. I truly hope some of the information provided from the following months of treatment will be helpful to another survivor, at some point.

In addition, I will update one or two more times, as my day 100 is quickly approaching, and the PET scan, along with it, to share the results with everyone. And hopefully, with that last PET scan, we will all be able to close this section of my life, together.

Sending tons of Love,

Bekah

5:30 am

It's 5:30 am, in Boston. I shouldn't be up. But I am.

There was a post, in the past, in which I spoke of emotional baggage. During this three day process of moving, a part of me wishes, I could leave behind a piece of my luggage.

fear.

Once again, things are slowly falling into place for the fall.

loving friends in boston: check
apartment i love: check
job openings: check
me smiling for the first time in a long, time: check.

But this piece of baggage, is something I just am unable to shake. No one understands the work, emotionally, physically, and psychologically it takes to get to this point again. Believe it or not, this will be my third attempt to start my life over after college. And it is no easy feat. Trust me, I enjoy these things. I enjoy the high of sending out resumes and getting call backs. I enjoy, moving into a gorgeous new apartment. I enjoy my friends getting excited for me, because my eyebrows and eyelashes are in full bloom :) I enjoy it. But along with that happiness, with that thing in me -- that is life. Comes the anxiety, fear, and knowledge that it call all be ripped away in a matter of seconds.

Because it can. it has.

I forced myself to write about this, this morning. For a number of reasons. One, to once again show that once treatment is 'over,' you as a patient and survivor are not necessarily 'done,' with it. Two, my responses, when I have voiced my concern have been, 'it's different this time bek,' or 'they're positive they got it all, don't worry about it.' And I need to get more out. And three, I'm scared. Plain and simple.

I receive the keys to my apartment in a few hours,and it really should be a joyous occasion. But, something inside, is nagging at me. Not the part of me last year that said, 'the cancer is still in you...' More or less a part of me that is saying 'don't get too excited, at least, not yet.' I guess those are the feelings that are consuming me. It always seems, once I arrive at a very happy place in my life, things are ripped away. And so, this time, I fear, once I arrive there again... the pattern, the cycle will repeat itself.

I'm sure this seems silly, and obvious to others. 'Why can't she just get over it?' But after an initial kidney disease diagnosis in college, leaving two homes, two classrooms, and two lives recently because of cancer.. it's hard to just turn my shoulder. It's hard to work through.

Trust that there is a large part of me that wants to break out into song and dance, over the things that are happening in my life. But for now, I guess, I feel I must restrain myself in some way. I'm just hoping, I'll be able to exhale... at some point, soon.


<3 B

Day +65, Moving Day!

My lovely check up on Tuesday:

Doctor Nasta: So, we're moving into the sixties. How are you feeling?
Bekah: wonderful, good.
Dr. Nasta: And you're no longer homeless, you found a place in Boston?
Bekah: Yep, all ready to go.
Dr. Nasta: When are you leaving again?
Bekah: This weekend.
Dr. Nasta: (big smile) Alright Ms Furey, looks like nothin' is gonna stop you.
Go get 'em.

(3 month PET scan: July 29th)

and away she goes...

b!

Honey suckles

I write, everyday; however, I don't usually share it. This blog is for updates through treatment and recovery. And now those are coming to a close, as I prepare to move. But thought, I'd share my writing with you, today.

---
innocence. 7:34 pm.

I almost forgot how sweet Doylestown smelled in the summertime. Since last summer was filled with different scents, this, being the first time in a while. I have time to smell the honey suckles. Which brings me back to summers here, when I was younger, when I was naive and pure and incredibly ignorant of what was outside of this bubble. That I call home.

Memories of graduations, memories of being on the back deck with old, old friends. It was nice to think, that heartache revolved around a crush on a boy. That real destruction of our identity stemmed from a rumor through the hallways. That a final goodbye... really did not have anything 'final' about it. But would instead, be a temporary farewell.

I missed the smell last summer, as I was too focused on old treatments and being angry at the world. I didn't take the time to think about how young, I was at one point. Or how young, we all were. At one point. The summer nights we'd lay in the fresh cut grass, thinking how invincible we were. Me, armed with a light blue dress and curls. You, with arrogance and assurance that in the end, it'll all be okay.

I've been in different states and cities, most of my summers. But none have the smell of Doylestown, and the honey suckles we used to pick off the elementary school fences, so long ago.

And I realized tonight, how, for so long. I've strived to be an adult. To be responsible. To grow up. To keep moving. And yet, here I am, wishing that somehow. I could still slip on that small, blue summer dress.

--
Today I am grateful for: old, old friends. who still put me in my place.
Today I smile for: black raspberry water ice and eyebrows!

Today I miss: being thirteen

- B

You're moving too fast, frames can't catch you when you're moving like that...

My two week trip to Boston turned into a permanent move. The game plan had been that I would stay in Doylestown, PA, the rest of the summer and move in September. However, if you know me, when I am NOT medicated...You know, very well, I am unable to stay in this town very long.

Unfortunately, for me, Dtown has been a place I come to when I become ill. So, mentally it is hard to stay here when I am recovering. My life, my education, my professional contacts, my friends, my heart, is in Boston.

So, with that being said. I signed a lease. And will begin to move in; hopefully, towards the end of next week.

A lot of people have voiced, that this move is too soon. I am two months shy from being out of transplant. So around day +60ish. And for most people who have experienced, are about to experience a stem cell transplant, or who have cared for someone undergoing this treatment -- you have a right to think this is abnormal, or insane, or too much. And if you are a SCT warrior, recoving from transplant -- I must stress...This is not normal.

I guess when it comes down to it, I pride myself on -- being unique, abnormal, walk to the beat of my own drummer kinda gal :) And in this instance, it is true again. A lot of friends and family have stressed that I need to relax, not rush back to life, ect. ect. And, though I take all of this advice and guidance to heart. And truly appreciate all of your kind words. I do know, what is best for me.

Part of me, during this recovery time feels the poetic irony. That I feel stronger, and want more in life, after each illness, each obstacle, each hardship. I want to fight and bounce back harder, than the last. I want more of myself, of my friends, of my future. The harder the experience, the more I want to prove to myself, that I can still achieve and accomplish more than I, even imagined.

And the wants in me, churns my passion, which stirs energy, which in turn creates a path and the drive to move back to Boston. To leave behind not only the third illness, but the second, and the first, and the memories that came with all of them. A lot of people have asked, 'Are you sure you want to go back? So soon? Are you ready?'

So am I?

I've even been told that I should take this third disease, this hit, as a sign. That maybe I should stay in my small hometown, find a job here, and settle.

For some, who experience transplant, this is a viable option. But, not for me. My world is in Boston, my future students are in Boston, my dearest friends are in Boston, my masters degree is in Boston. My life, that I've been patiently waiting for... is in Boston.

So while other's are saying, 'Bek, you're moving too fast.'

My response is -- Honey, I should be there, already.

So sit tight loves, I will be fine. And although, some of you feel this is too soon. Too much, too quick, too overwhelming. It's just right for me. And in the end, that's all that really matters.

Here's to a new future,
Here's to a new life.
L'chiam!

- B

Trough

There is a trough in waves,
a low spot
where horizon disappears
and only sky
and water
are our company.

And there we lose our way
unless
we rest, knowing the wave will bring us
to its crest again.

There we may drown
if we let fear
hold us within its grip and shake us
side to side
and leave us flailing, torn, disoriented.

But if we rest there
in the trough
in silence,
being with
the low part of the wave,
keeping our energy and
noticing the shape of things
the flow,
then time alone
will bring us to another
place
where we can see
horizon, see the land again,
regain our sense
of where
we are,

and where we need to swim.

- Judy Brown


Packing. Organizing. Moving.
Residing in Boston, for good, July 1st.

<3 B

I think I'll go to Boston..

Cancer Warrior Updates:

Before I begin rambling about myself. There are a few individuals I wanted to call attention upon. Some cancer warriors, to be proud of and send wonderful thoughts to.

My love, Michelle -- had her nine month post scan a few weeks ago. After undergoing eight months of chemo last year, she is still clean, more beautiful than ever, and just completed her first year of grad school!

My PA sweetheart Scott -- is undergoing an allo transplant this week. He received his cells last Friday, and is knocking down this treatment, one day at a time and doing an a=mazing job.

My SCT sista Darcy -- God love this woman, she's moved from Mexico to the US, to not only have one dose of chemo, but go through a stem cell transplant, like myself. Her re-birthday will be this weekend or early next week!

my sweet Darrel ;) -- who not only had clean scans on his one year mark of transplant, but just completed his first year of grad school, and a huge recital, all within the last few weeks. Have never been more proud of a friend in my life.

And, last but certainly not least, Wullie and his sidekick Veronica -- just received his one year post transplant scans, and his scans were completely clean as well. Who knew one year olds could be so cute?

I always feel so honored, to know I am in the company of these wonderful warriors. And, I definitely, don't say that enough.
------

So I think I'll go to ...Boston

After passing day +30, last week. I finally feel as though my energy level has skyrocketed into another dimension. And it's wonderful. So what else is there to do, when you have energy?

LIVE and go to the best city in the world...

I packed my bags last week, and drove the six hour hike up to Boston. To see all my beautiful friends and some past coworkers. A three day trip, has turned into seven days, the weather has been absolutely gorgeous. I've been filling up my days, with looking at apartments, soaking in the city in my old stomping grounds, and nights with the loveliest people in the world. And once again, I've fallen in love with this incredible city. Plus the celtics are about to beat the lakers for the championship -- what better time to be in Boston?

LOTS of things are still up in the air for the fall. Except, knowing that I'll be back here. Probably sooner, than most think. At this point, I'm halfway through my masters degree in Literacy (for Elementary Education) at Lesley University... which I'd love to finish within the next year. I am qualified for some part time positions in Boston School District (if I decide to continue on with disability), and am beginning to pursue full time teaching jobs in the district as well.

I have faith, that things will fall into place. And if they don't -- I'll make them :) I'll make it all work. Somehow. Emotionally, Physically, and even Financially. I'll make it work. For now though, I am incredibly happy that I have these issues to worry about instead of transplant, cancer, pills, chemo, and the world, I'm leaving behind for the second and hopefully last time.

Seems the clouds have finally parted, kids.
The sun is definitely here.

Bekah's back :)

<3 B

she smiled, because she can.

... still alive.
smiles are starting to break out :)

Smooth Sailing...

The one constant thought, that remains in my head from other survivors finishing treatment, transplant, or just going through this process is that. One day, you actually wake up -- and if you're lucky (like we all hope I am), we never have to go back. We don't have to go back to the chemotherapy, the IV poles, knowing all of the nurses, putting our lives on hold. If we're lucky, we get to move on.

Along with this gift; however, comes some emotional baggage. From most survivors, you are never truly 'done.' Sure, we may wake up and leave the hospital, our ports may be removed, our hair may grow back. But we are never truly able to escape the memories, or the fear, that it could always come back. And just as some may say, 'Well, you never know you could get hit by a bus...' It's a little different in our case. Therefore, if you know a survivor, a friend, a family member, someone who is still going in for scans three years later to make sure the cancer is still not there. Try to slip on our shoes for a moment. We have fought, tooth and nail to be healthy, and in a moment it could all be taken away...

Therefore, we cheer when other survivors have clean scans, we smile up at the bright skies when someone has hit a remission, we hug and cry over simple small things that others have no idea about. It's a bond, not many can speak of, unless you're part of this community, but one I wish to share with you. Because, I have felt blessed enough that others outside of survivors, have cheered me on -- you know how everyday can influence our lives. In a moment or a second.

As for me, I am on day +23 after transplant. I had my first check-up yesterday. No transfusions necessary, medications are starting to slow down, and no blood work for two solid weeks. Although the fatigue is definitely keeping me from going out and being the twenty four year old I want to be. I'm able to work out twice a day, and am starting to catch up with friends.

I've also been informed, that I will be more than capable of taking over a full time teaching position, come September. (can we all cheer now?!). So the next few weeks will be dedicated to finding a job, because... once again I'll be moving back to Boston in August, to attempt to start this life over again.

Now that I'm on the other side, things are definitely looking up.
Just as the wisest woman, we all know said --- the only way out is through.

And I think I'm on the other side :)
Smooth Sailing from here kids...

All my Love,

B

I feel it in my veins...

It's True. The good stuff, i feel it...

I'm out of the hospital, and I have YET to stop smiling. It's only been 24 hours since I've been let out of those white walls. And I just can't tell you how much more you appreciate the little things again.

When I was first re-diagnosed. I felt like I had this appreciation. Small crunch of a boot in the snow, perfect clear sky. The ability to see your breath in the air. And now as Winter, has finally fallen ill behind us, Spring has definitely sprung, and there are a bunch of other small things you get to appreciate during this season. Even missing an enitre month of the outside world in the hospital. The things I missed weren't just my friends and family.

It's the air. the perfect sun. The spring day, as cliche as you want to make it sound. The greenery. God, the baseball season. Smelling the scents of fresh cut grass, hearing kids getting ready for summer and their thrilling smiles and laughter. It's just... it's too much, after you've been in the hospital for so long. But, its in my veins. All of it. The good stuff. And I'm eating it up.

Today, I realized, I have to take things very, very slowly. All the more time to smell the good things and feel that spring air right? right.

Hope you are all so well. And that spring has brought you as many smiles, as it brings to me and my family. We are all very 'bright' would be a good word to use, these last few hours.

All my Love,
Post SCT,

B

report from bekah's mom

Rebekah had her stem cell transplant on mon- 13 bags of cells over approx 2 hours.
She has spiked several neutropenic fevers. She has severe mucositis, which is very painful and makes it difficult to eat. Pain and symptom management stopped yesterday for a consult and set up a PCA pump with fentynal for pain. Similar to morphine pump, this pump gives her a continuous drip of pain medication which she is able to increase by pressing a button. She got a decent nights sleep last night. Before transplant, she was walking a mile to a mile and a half a day.
After transplant til yesterday, she could barely stand up because of the severity of the pain. Today, she and her pump hope to resume their walking routine.

Diane and I have been here 24/7 except for the night before transplant when she was feeling good and had one of her favorite nurses. Bek encouraged us to go home and get a good nights sleep to prepare for post transplant.

We have her room decorated with pictures and cards from everyone- as well as with her bed linens from home- with her Aunt Bobbie's quilt and with Nan and Pop's friend Jackie Heinz's afghan- stitched with a hail mary in every stitch. We have taken over the room. Posters from her friend Darrel adorn the walls. Boston Red Sox hats in several colors hang from an iv pole from the ceiling. We will need a u haul truck to go home.

We are certainly not out of the woods yet, but for this moment-right now- she is not in severe pain, Diane is trying to figure out what she can eat- assembling a menu of sorts that will work with mucositis and Bekah is sitting up in bed eating oatmeal. just a short moment of rest- but we will take it.

thanks to everyone for the thoughts and prayers- keep em coming!
darlene