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