I'm ready to talk about it...

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

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

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

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

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

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

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

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

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

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

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

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

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

-
Bekah

Good news or bad news?

I apologize if I have not gotten back to you tonight. or today.
Lots of people called and emailed, and to say the least I just had a very, very long day.

So good news or bad news?

It appears that my disease is 'stable.' With the preliminary report. Which is good. However, because of my low platelets, I most likely will not be on this trial much longer. My body does not seem to be handling the drug very well, and every other week I'm on and off.

They begin this trial with 40 mgs, then each time my platelets plummet, they hold the drug for a week and await for them to rebound. Next dose, I was lowered to 30, last week I was at 20, and now, with only twenty-something platelets today, I will be lowered most likely to 15 mgs.

Although, I have a very strong spirit. I know, I have a very, very weak body. And so, the doctors today basically think, within the next three weeks. I will again go through the motions -- take the drug, watch my counts dive, and then... Well, they don't go lower than 15 mgs.

So - good news. No new disease, as it appears from this point. So, I have a few spots still in my chest. Bad news is, that it looks like its the end of the line for this trial by the end of December. For other hodger's who are reading this... the LBH589 trial works, well is working for many. And many, their numbers are not diving. I am, to say the least, not the norm. Unique. Heh.

The LBH, is now heading into a phase II trial, just for Hodgkin's Lymphoma. And, I do recommend it for those who have relapsed after their transplant.

Luckily, my family and I have already discussed the next steps. Since, we knew this was occuring with my blood levels. In which, I will update all of you, in the next day or so. It will be at DF, and it appears, not that toxic.

So, we will see.
In my eyes, there are always more options...
promising trials and research.

Sending Love to you all,

Bekah

Thanksgivin is a comin'

Im slowly learning, to roll with the punches on this trial. And I think I'm getting better at it. For one, when I do feel good -- I'm sucking the marrow out of each bone presented. Living, as much as I can (or at least I attempt to). here are some beautiful pictures, of some beautiful people.. in the last few months, that have kept me going. And that, to put it bluntly, I'm just really thankful to be surrounded by such pretty faces.

Before the trial began in October, my two dearest friends John and Tim took me on a 10 mile hike through the New England Mountains....It was right before the Trial started in September, so I had some more energy in me than I do now.









In September we got to celebrate with a few friends, at one of the last Sox Games at Fenway, and my good friend, Darrel, joined us from Ohio.













October, we had difficulties with the LBH, starting, and all of the side effects. So, in my mind, my good thoughts just moved straright towards November, in which we had a college reuinion in Boston, with most of the girls I graduated with from Wheelock.


Especially SAMMY! who just got recently engaged, and we are all thrilled for her :)
The rest of the crew



Me and Joshua - one of my best friend's husbands.

Myself and Amanda....


Jen and Joshua...
The newly engaged, Sam and Joey.

Two of my favorite girls since college,
Nik and Jen. <3


And our other newly engaged, Ms. Emily :)







Some of us the morning after.... Sometimes, its really really nice, to forget that you have this chornic cancer, that will never go away.


And just, surround yourself, with pretty faces.
There are some big changes coming up for me, if I end passing certain tests, interviews, and essays for a program at Lesley. Since, I will most likely not be continuing my Literacy Degree for the classroom teacher. I've found that, with the restritctions of trials, and my fatigue level, I needed to look into another career. One with more flexiblity and hopefully a little less time standing up 24/7.

I'll update you all soon, as things progress. But I think I will ultimately, be very happy when the beginning of January starts setting in, and I am on a path towards a Job, that I love, and is flexible for my life with cancer.

Hope you all are well, and getting ready to see your favorites on Turkey Day.
I know I am.

Sending Tons of Love,

B

Regen

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

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

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

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

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

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

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

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

Rain.
regen.

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

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

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

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

- Selma Meerbaum-Eisinger

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


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




I continue to see and embrace those rays too.

Sending Love,

B

And she woke up....

I have lots to say, lately. But haven't been able to correctly put them into thoughts.

So, I wanted to share some good news. Very quickly, and after I process some things, share some more. As most of you know I was in a fog this last month. Not picking up the phone, not emailing, not really showing any sign of life.

My friends, endlessly came over to deliver milkshakes, and smoothies. My mothers, begging me to put on weight. My head, not in a good spot. But this weekend, I awoke.

I had a PET scan on Friday. Entering this PET, was something, of unknown territory, as this drug has made me so sick that I just, I wasn't sure what exactly I was hoping for.

The good news, was -- my drugs, were moved around. Meaning, lower dosage, more energy, other medications were added to help with side effects. It finally felt after an entire month of living among the dead, trapped in my own body, that I was able to move.

And, better news was, the PET scan revealed that most of my disease is gone. After only three weeks of being on the LBH589, the disease inside and outside of my spleen is gone. And the nodes in my upper chest that had an SUV level of 11-12 last month, have shrunk to 2's and 3's.

As most of you are probably jumping up and down -- the drug is working! The response is wonderful! Thank god! It IS all good news, do not get me wrong. I just have to be cautiously optimistic. After venturing through two FDA approved treatments so far, most likely, I will never be 'cured,' this disease will come and go, for years on end. So, although I will most likely receive a remission -- it could be for a few months or a year, and then we will have to look at another trial. But, it IS manageable. This is doable. And, a semi-normal life, is possible. With patience.

I continue to be thankful, that I respond to almost every drug that has been thrown my way. Some, others, are not so lucky. I am.

Lastly, I wanted to add, that this week, last year we lost a true Hodgkin's warrior, Anne-Marie Dunn. Last year on November 5th, AM, passed away. She had one of the those no-bullshit attitudes, and at the beginning of my journey gave me a lot of solid, clear-cut advice on life and this disease. For those of us who knew her, I just wanted to remind you to send some love, up to her, and to her family. It's important, to not forget, those who fought before us...

So kids,
Slowly, I'm opening my eyes again...
and waking up. with a rather fine PET scan in front of me.

Sending Love
to each and every one of you,

B

Grateful

I have learned, that no matter how much pain or discomfort you are in. You can still maintain a point of being grateful. And today, since my blood levels were somewhat in the 'good' category. And, I had a few extra things to smile about. I wanted to share them.

Even though, everyday, I write down at least five things I'm thankful for. I don't share them too often, and today, I just felt, they needed to be shared.

Today, I am grateful for:
* Good blood levels
* Some bad-ass CD's i received in the mail from Jessie O , with songs that have never made me cry, in such a soul, clenching, beautiful way. I'm so grateful for you J.
* Filling my two cavities. THANK GOD. no more mouth pain.
* The colors in Boston today.
* The dental assistant that told me I have seriously the cutest hair and glasses she's ever seen.
* The young man that asked me out to coffee, lets re-state that, the hot young man, that asked me out to coffee. In which I politely declined. (I need some Bekah-time boys, sorrrry)
* The silver, absolutely, jaw-dropping, beautiful bracelet that Darcy sent me, engraved. Which again, made me cry. Sisters, my love, that we are. I'm so grateful for you, d.
* My friends in Boston who are bringing me milkshakes, slurpees, and smoothies whenever I allow them. and call and call and call.
* Lowering my dose of drugs! so I can hopefully have a life this week.
* Alison and Adrienne, for showing me, I can do this. I can do this. I can, and will do this.
* Crepes, with brie and mushrooms from coolidge corner.
* A family, who really, truly, cares.
* My moms. my moms. my moms. who fight about how to hang a curtain in my apartment, but will drive six hours to help clean my living area, so I don't feel overwhelmed.
* Cards from women, who make this world worthwhile
* Wearing a scarf around my neck, this fall, and not on my head.
* Finding rock bottom, and still being able to look up.

To cut through the bull, last week was possibly one of my darkest weeks I've had in the last two years. But, I'm slowly climbing out of it. My drugs were lowered, hoping that my blood levels will somewhat allow me to function outside of my lovely apartment. As well as a PET scan has been scheduled for October 31st, to see... what? To see what's going on in this cute body of mine.

For now, though,
let me just be grateful.

This week marks six months post transplant,
and although I am not cured,
I am
still here.

<3 B

Sometimes just surviving is a noble fight...

As most of you know, I like to keep tabs on other cancer survivors and warriors who have somehow touched my life. Little, eight year old Michael, has certainly been one of these kind souls. I can't describe the kind of kid, that Michael is, only that he had more fight in him, than most of us do as an adult.

Early April of this year, Michael,
was diagnosed with type B-cell lymphoma.

After months of fighting off blood infections and cancer. Michael and his family, had decided a few days ago to hold off treatment, and let this vicious disease run its course. And, not put Michael, through any more pain.

On days like today, where I lay in bed, and find myself in pain from a trial. Or want to curse the heavens for my hand in life. Or when friends or family members complain about the difficulties in their life. I want to redirect my thoughts, your thoughts.

Michael passed away today. From what I can tell of how his mother spoke of him, he was an incredible kid, with a huge heart, and a fighting spirit. And just because the cancer overtook his body, it does not mean it changed his meaning or purpose on this earth.

So I ask you, on days, you don't want to get out of bed.
On days, when life just seems too hard.
On days, we want to give up -- because we all have them.
Just know, we should keep going, we should keeping moving, because we can.

If you have time, leave a message for Michael's mom on their caringbridge site.
Losing a child is probably the most heart breaking situation I can think of, I know she'll appreciate your support.

<3 B

LBH589, oh how I despise you....

To literally cut a long, three week-story, short. LBH589 has been nothing but hell. Emotionally, Physically, Psychologically, just everything has been very, very difficult. And it being Sunday, I am not looking forward to this next week.

To summarize, my schedule at the hospital last week was as follows:

Monday 7am-7pm
Tuesday 9am-12am
Wednesday 9am-2pm
Thursday 9am-12am
Friday 7am-4pm

It was, to put it bluntly, just hell.

Next, were side effects. The LBH itself are two small pills, 40mgs. The dose is taken on a M,W,F schedule. Every single M,W,F. You'd think something as small of a dose as that could not affect your entire body. But, in this case, poison is poison. Whether it be infused, or swallowed. And boy did I get a good kick in the butt, reality wise.
Side effects listed on the trial were: nasea, vomiting, fatigue, GI issues, shivers, fevers, skin rashes, insomnia, anorexia.

I can tell you out of the nine that were listed for 'minimal' side effects, I had eight of them. My doses would start at 7 or 9 am, and four or five hours after my dose I would begin to have flu-like symptoms. The nasea, was the absolute worst, so we tried to focus on that issue first hand. Since zofran (a common anti-nasea drug is not allowed on this study), and compazine (which I'm allergic to) are out of the picture. After dicussing things with my two favorite men in my life (My uncle Jay, and my good friend Darrel, and I think you mentioned it too Alison!), it seems that Tigon (which has been discontinued) and Kytril are working the best.

The GI issues, are ones I wish not to talk about, trying to find a balance between imodium, and Senokot, leaves me shuddering just thinking about. And, pain in my lower abdomen, that makes me want to sleep all day.

And the flu-like symptoms are usually for a straight 24 hours, a few hours after a dose of the LBH. This means, the following day (Tuesday night), I begin to feel better, only then to return to swalloing the pill the next morning, and returning to the same cycle. In addition, I am force feeding myself, as I've already dropped around 5-7 lbs in the first week. Due to the nasea, GI issues, and never being hungry.

There is a lot more, to all of this as well, but those are the nuts and bolts of my treatment so far. This week I will only need to go in mornings of Monday, Wednesday, and Friday. Even though those are just the physical side effects that I've described, being back in the hospital again, surrounded by chemo and cancer, has side effects of its own. But, I'm working through them.

I've realized, it's no longer a sprint, at this point.
But a long, uphill, marathon. To where? I'm not sure.

My hope is that as treatments, and medications are sorted out I will have some kind of quality of life, since all of this week was either spent in a hospital bed or my own. And that the side effects will become more tolerable, as will the idea of being treated... for the rest of my life.

I realize that this is a very 'non' Bekah update, not really explaining my emotions or thoughts. I've just literally had hundreds of emails, asking how I am doing, and what the news was of the new trial. So, I felt the need to throw all of this out there.

On a positive note,
At least there is hairgrowth, to speak of....


Hope October is being wonderful, to all of you.
And wherever you are... you're enjoying fall.

B

Change of heart

As most of you know I was gearing up for the NYC trial at Columbia with Doctor O'conner. After a few last minute thoughts, and conversations. I've decided to back out of this trial and go with my gut, and begin the initial screening process for the LBH589 trial here, in Boston.

So Plan A = LBH589.

So many people have offered me their homes, and meals for the next week in NY. That I did not want to appear rude, by ignoring your invitations. And although, I don't have too much information, as of yet. I know that the start date for my first cycle will be October 6th.

The pathologies have been sent back to Dana Farber, the screening tests are taking place this week. You'll laugh at this... Thursday they're doing ALL of my tests. BMB, blood work, EKG, RVG, separate PET/CT scans. Oh the days of being in the hospital from 9-5, you have to love them. But, at least the tests will be done. We'll have all of my results ready by Friday.

The trial has to start on a Monday and due to high volume level for clinical trials, DF says the earliest they can start me is the 6th; however, if someone were to cancel an appointment, or back out, I could start September 29th. But, if we start on the 6th - hey - that's okay with me. One more week of freedom :)

I hope everyone will be able to support my choices thus far, but in the end, I know it really is my final decision, and how I truly feel about each trial. Just know, there were a lot of different factors that gave me this change of heart, which I will share with you all a little later...

Just wanted to send out the word -- so for now,
goodbye Columbia... hello Dana Farber.

* for the worriers in my life:
In the end, the time difference will only be ten days later of when I begin the drugs. In the grand scheme of things, and that is of Hodgkin's, this time difference will not make a difference in the efficacy of the drug or on my disease.

Trust me, this was a good decision.

Sending Love,

B

Save a life

The National Bone Marrow Registry is extending a deadline to register individuals to see if they are a 'match,' for those who need a bone marrow transplant. Normally, it costs money to register. But, you have till September 22nd, to register for free.

For people like me, friends of mine, and strangers you hardly know. All you need to do is register on-line, they send you a small kit, you swab your cheek, and send it back. No blood, no needles, nothing. Just a cheek swab and you could literally, save a life.

It could be mine, a year or two from now.

Register: here

Why should you register?
For kids who didn't have a chance to live past the age of ten,
like Evan and Boey
For young women, who are waiting after months of chemo like Michelle and Eureka
and survivors like, Andrew (from Something Corporate) and Eric.

Save a life,
register,
swab,
mail it back.
make a difference.

<3 B

Jennifer Willey

Another Hodgkin's story you should read up on is, Jennifer Willey.

Jennifer is 29 and is one of those true, true, cancer warriors. That has undergone incredibly intense amounts of treatment from standard chemo, Auto and Allo transplants, and now fights for her life everyday. Trying and succeeding in finding the beauty of life, even though she hardly ever leaves her home. And has breathing problems, as well as GVHD (graft verse host disease). She is another kind, warm, brilliant soul and light in the darkness that is cancer.

Recently, her mother, Vi Willey, was interviewed for this article, that I wanted to share with all of you "mothers" out there. These two women combined are pretty powerful. And their strength is overwhelming.

I hope you can take the time to read over the article, Jennifer's Journal, and hopefully leave her a nice comment, to cheer her on.

Sending Love,

B

One foot in front of the other...

Even though I feel somewhat calm about my decisions thus far for treatment, there are still calls, appointments, and schedules to be set.

On top of that I started my second to last semester for my Master's program this week.

So, I'm a teeny bit stressed.

So... what has she decided? Might you ask:
We will start with a clinical trial at Columbia, with Dr. O'conner, most likely starting next week.

However, there has been a major hold-up. The pathology slides that had been sent out to Dana Farber, were lost for about a week. We finally found them in doctors office at DF, and they've been sent back to Upenn, as of yesterday. Thus, we can finally send these slides to Columbia (Where Doctor O'Conner will be treating me). But, we can't set the wheels into motion until they have all of my information.

Most likely, next week I will commute from Boston to NY. (Once a week for about 4-5 weeks), to start this trial. Since the SGN-35 Trial (CD-30 Antibody drugs) is closed at the moment, my decision on what class of drugs to start with was fairly easy. So, we will start with the H-DAC drugs.

This specific trial is: PXD101, it is through oral pills; however, it is a study focused on solid tumors. Hodgkin's disease however, is a liquid tumor. So this trial is for 'lymphoma's.' I'm optimistic under Dr. O'conner's care, but my gutt tells me, that I have a better shot at maintaining this disease under the anti-body drugs (SGN-35). Only time will tell. Thankfully, I do not have any major B-symptoms, except for a small drop in weight.

I know this is horribly confusing. Just know, I have a plan A (PXD) and a plan B (SGN). My plan B will not be available for me until sometime around November or December. Since that specific trial is closed at the moment. But, it will re-open in a few months.

So for now, we start with PXD, which is a phase II trial, that focuses on lymphoma, and under great care of a doctor. We will scan once a month. After the second month, if there is more progression of my disease than not. I will discontinue this trial, and hopefully just jump into plan B. If the disease progresses too much, we might need to go back to chemo for a month. But, lets not get a head of ourselves.

I hope my lack of energy doesn't translate into negativity. Because that is not the case. It's honestly, just been a very, very, draining week. Making calls, starting classes, researching trials, being on the phone for hours trying to hunt down slides, talking to doctors. But know, I feel comfortable with what I have in front of me. I just wanted to update, to let everyone know what the next few months will look like.

Plan A: PDX
* Once a week for 4 to 5 weeks in NY, to check in with O'conners team, blood work, tests, ect. (Then only once a month, after we get through the first month)
* Oral pills, 14 days on, 7 days off.
* minimal side effects (fatigue, nausea, gi issues)
* Scans every four weeks

Things that have nothing to do with cancer that I am thankful/happy about

* classes that I love
* being with friends, and welcoming fall with open arms
* starting to volunteer as a literacy aid 2-3 times a week starting in october
* signed up for a yoga class
* knowing, i'm still here. and will be, for longer than most think.
* and hair! For those going through transplant -- this is just shy of five months out.



Personally, I am taking off the next few days from cancer (can she do that?) heh. Yes, I can. Going to focus on my first paper and readings of the semester, fixing up my apartment, going to a sox game, and relax before Plan A begins.

I'll share more about the trial, next week.
Sending out my love
to all of you,

B

Keep Living.

In the last two years, I have waited. I have waited through chemo, through moving, through losing friends and jobs, I have waited. For a cure.

And maybe that is where I was wrong in all of this.

We always say in life -- live out each day. Live like it was your last. But do we really do that? Do we really tell people how much we care for them everyday? Do we really throw caution to the wind and do what WE want to do in life instead of being comfortable, do we really follow our passions?

The answer is, no. We don't. At least, I didn't. And I am still adjusting to the world of 'not waiting.' For the last two years, after each treatment, I was told, I would get my life back.

'Leave Florida Bek, you can go back after these six months of treatment.'
'Leave Boston, Rebekah, you can go back to teaching next year..'

So what happens, if after all that waiting? The same result ensues. You've waited, for better days. When there are possibly SOME days during treatment (now don't get me wrong, chemo is rough and horrible, so there are only some days) that could be right in front of you. There were times in the last two years when I thought to myself, "I'll wait til tomorrow, or next month, or next year..." to try something, to go up to someone, to call someone, to wrap my arms around someone, to get involved. I waited. For better days.

But the cure; unfortunately, doesn't always happen for everyone. So what happens to those of us where the 'cure' might not be possible? Those better days, of being done with drugs, done with hospitals, done with this life -- may never be done? What do we do?

For me, the answer to those questions is... to live. finally. and fully. I actually start to live. With everything I've got. I've waited, for two years, some may even say longer. For a break, of some kind. When the kidney disease stopped, when the cancer was over, when I could put all of this behind me, and start fresh. But, now I look at myself in the mirror and ask myself, why didn't I live before? Why didn't I feel like surrounding myself with friends all the time, shouting out to the world 'I am woman, hear me roar!' Why didn't I say 'I love you, with everything I've got in my soul." Why did I wait...

This entry, is not as much for me, as it is for all of you. For those who are just starting treatment, for those who have seen pain and heartache. I was not ready to see myself last year, for who I really was, or what I thought. But now, I am starting, or attempting to change, a bit.

I've decided I can either, wait. For 'possible' better days, maybe a trial with few side effects, maybe a time when I'm not on treatment, I could wait, and wait and wait. Or, I could find the beauty, in the places that I have it now. I can dwell on the good aspects of my life. I can focus on what I do have, instead of what I don't have in my life. And be thankful. And grateful. And live, now. Instead of wait, for another time, a better time, an easier time, to move forward.

It is true, some people deserve a break. We think, once we've endured something as horrendous as cancer, the rest of our lives should be peaceful, calm, and healing. But life, can be awfully unfair, to really incredible, beautiful people -- trust me, I've seen it happen. What I find, and WHY I find these people to be so inspiring and beautiful, though, is not the fact that they survived, or got through. But that, they took each and every day. And did wonderful, things with it.

They lived. not only during the good times. But the difficult times too.
Something, I hope to achieve, in my life. As I keep moving forward.
Something, I hope for each and every one of you.

Just remember, we are still here. Sick or not. Ill or not. Weighed down with heartache, or not. We are still here, breathing. So, maybe we need to start acting like it...

Sending all my love
to every, single, one of you.
have a beautiful weekend.

<3 B future treatment will be confirmed by the end of next week, stay tuned ;)

Lastly: To see another side of Bekah, and get a little bit of a giggle go visit JessieO's blog. And her entry on September 5th. You'll enjoy her as much as I do, I'm sure of it.

Cancer's a full-time job

Yesterday I had the lovely opportunity to wake up at six am, drive five hours to New York, and spend the day at Columbia, only to arrive home in Philly at 11pm. After last week, meeting with my Upenn doctors and people at Dana Farber, I'm feeling as if having cancer is a full-time job between the traveling, the meetings, and the time spent at hospitals.

Thank god for three day weekends. Which mine was excellent, hope yours was as well :)

Okay, the points. Get to the points... I'm updating, now instead of later on in the week (which I'll be doing that too), because we found out a TON of information yesterday from a lovely Doctor by the name of Dr. O'conner at Columbia. IF you are a relapser, and feel as though you have no where to turn. GO TO COLUMBIA. Find this man, and pick his brain. Adrienne's mother, Alison referred me to him. And he is a god send.

Basically from speaking with him, and his team. We have ruled out a few things. No allo-transplant (which is what my head was thinkin' anyway). There is no point, at the moment, to do one. We have too many options on the table. And, to put it bluntly, it would be more of a suicide mission at this point, the way my body is.

His main points of the meeting were:
* Let's build your body back up this year
* Let's stay away from chemo for as long as we can, since the cancer is used to chemo and being resistent
*Let's give you some quality of life, let you go out and live for a year or so before we throw some big guns in here.

It was a complete relief to here him speak. To talk to someone who is a doctor, and said, that I have had too much chemo over the last two years, and we need to give my body a break. Because, although I still have that 'fight' mentality, I am tired! God, I'm tired. Of chemotherapy.

So, if we're not taking the transplant or chemo route, you ask... what are you doing then Bekah?
(I'm exhausted, so bear with me talking to myself please...)

There are two options on the table for clinical trials. Two types of drugs that are new to research, not life threatening, and showing results in reductions of disease. These two classes of drugs are called H-DAC inhibitors and antibody drugs.

H-DAC verse Antibody, that is the question.

H-DAC (Phase II/I Trial)stands for: Histone deacetylase.
H-DAC are a class of enzymes that remove acetyl groups from an ε-N-acetyl lysine amino acid on a histone.

Bekah's Definition: H-DAC is a group of enzymes that basically are released into your body, to find the cancer cells. They then selectively effect (by damage or killing) a part of the cancer cell's DNA by taking out/destroying a piece of it's strand. The thought is, if a piece of the cancer's DNA can be damaged, this changes the cancer, and because it does not have the same identity, it dies off, becomes stagnant, or regresses in some form. It's almost as if the cancer is still there - but now we've taken a piece of it away (like a puzzle), without the complete puzzle. The cancer is shut off, and it can not grow without all of its parts.

CD-30 Antibodies (Phase II/I Trial)
However, antibodies kill the cancer cells in a different way. Seattle Genetics can define it a lot better than me. Their definition for antibodies are: drugs consisting of an anti-CD30 monoclonal antibody attached by a proprietary, enzyme-cleavable linker to a derivative of the highly potent class of cell-killing drugs called Auristatins. The ADC binds to receptors on target cells, undergoes rapid internalization and then releases active drug from the antibody carrier inside the cell. The linkage system is highly stable in plasma. Thus, SGN-35 is designed to have low toxicity and high specificity for antigen positive target cells.

Bekah's definition: Think of this like a magnet. The drugs are released into my body the cancer cells are a positive, the drugs (the anti-body) is a negative. They are attracted to each other like a magnet, once they find each other in my body, the drugs release a toxic agent, and poof! the cells supposedly die off.

So... those are the two types of drugs we're dealing with. I'm much more familiar with the antibodies than H-VAC drugs. So, I have to do more reading, and hopefully I can explain better after this week. Either way, both are clinical trials. And the good thing about trials is, I will be scanned almost every month I am on them; therefore, if one is not working. We move on to the next, and don't waste any time. Once we try two or three, we might need to intervene with some chemo to beat the disease back a bit. But that is doable, since I am chemo sensitive. And then, we will try another trial...The hard part about trials is to decide which one to pick. Both are offered in NYC. One is offered by Dr. O'Conner whose focus is relapsed/recurrent and refractory lymphomas.

He is also an advocate and supporter of the Alese Coco foundation, Fight 2 Win. Which is an incredible foundation dedicated and remembering the life of Alese Coco, a young Hodgkin's warrior who passed away last year.

However, I have lots of fellow Hodgkin's fighters, that I personally know, who are going through the SGN-35 trial (antibodies), that are seeing reductions in their disease. So, to say that this is a hard decision, is an understatement. At least, the more information I gather, I am slowly crossing things off the list.

So for now:
1. No transplant within this year (another auto, or an allo could still be options later on)
2. No hard chemo within the next 4-5 months
3. Focusing on clinical trials that give me a quality of life, and have minimal side effects.

Oh, and I didn't mention -- (Edit to add: only H-DAC drugs are oral pills, antibodies are infusions) some of these clinical trials are taken orally. That's right. I get to take a pill each day, no infusions. Now that is amazing. And, for now, all we can do is hope that one of these trials will reduce my disease, or keep it the same size. At this stage we are just trying to 'manage' the disease. It is not in any major organs, or bone marrow, so it really does not affect my daily life all that much.

Lastly, I apologize if this seems very confusing. It is! Even for me, who understands most of this stuff. And I truly, truly appreciate everyone who has taken the time to read up on my story. Believe it not, the more informed YOU are, the easier it is for ME. It's so nice to talk to friends or family, that have read my entry. And can fully discuss things with me, to help decide or give me their input on my next steps. You have no idea how much easier it is, if you have done your homework too ;)

Just know, I am trying to make the best decisions I possibly can, with the best doctors in the country. I'm hoping some of this information helps some of you follow my next steps. I'm headed out the door to Upenn this morning for the day, to rehash some of this stuff over with my transplant oncologist, who is sensible, understanding, and wants the best for me in the long and short run. And will have a family meeting tonight, to discuss more on this topic.

I'm hoping after this week, I will have a firm and final grasp of what I would like to attempt to do in the next three to four months, along with pursuing my Master's degree. In which I hope to walk, with my class, this May.

Alright, another day, another cancer center.
Sending all my love
to all of you,

B!

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