Baby steps..

The last three weeks have been some of the most difficult I think I've had to experience physically and mentally. But ever so slowly, I feel parts of 'Bekah' returning.. which is always a good thing.

Last week we visited Upenn, and had a consult with my transplant oncologist to hear about options in PA. It was a decent visit, with somewhat too many options to choose from.. but we're not jumping onto anything just yet. The visit was also a blessing because, after much coughing, fevers, vomiting, and a lovely bunch of symptoms. I was prescribed anti-biotics, a low dose of steroids, and more meds to make my body relax.

Within a day, my coughing stopped, fevers haulted, and I can breathe again. This obviously could be masking B symptoms. I was able to try the aleve thought-process before the consult, and the fevers did not stop. So, we're hoping that this is more or less due to me not being mobile AT all in the hospital, and a culmination of other things... at this point it looks like we'll scan soon to see where we are, and take it from there.

The moms and I also scheduled another consult with Dr. O next week, to check in and again, hear more options.

For now, I feel as though I'm ever, ever, so slowly coming back from a huge wipe out.. both mentally and physically. But, at least I'm not headed in the other direction, I was even able to gain 2 lbs recently. (We cheer for that here). The good thing is, besides the steroids making me absolutely insane for a week -- all other symptoms have decreased in some capacity. What I hope to do in the next month again, is just recoup as much as possible as the cancer has obviously grown and we'll need to move to a new treatment.

The important thing though, is I'm strong enough for this next treatment. Mind and Body.

So, that is where I am at...

Baby steps, right?

Sending love,
B

Home

Late Monday night, I finally came home.
Wish I could say I was feeling better,
but the truth is Upenn could not figure out what is causing my daily fevers, or other side effects.

For now, I'm home in bed, with home infusion care helping with fluids
and good home cooking.

Next Goal: Recovery

B

going crazy

After two whole weeks at the Doylestown Hospital in Pennsylvania. Tons of antiobitiotics, fluids, and everything else we've preveriously done in NYC.  I am a little bit at the end of my rope. Doylestown, does not feel as they are capable to 'handle' my case, so tomorrow morning me and the moms will transfer over to Upenn Hospital. Hoping to GOD that this is figured out.

Fevers are spiking once to twice a day, vomiting, and still loss of weight. Let's hope my transplant doc (Sunita Nasta), the oncologist I love the most will find where this infection is.... and destroy it. Nothing is turning up in cultures, there was something abnormal in another tests, so we're hoping this is the answer.

As for the future? There is no way I have the energy, stamina, or cognitive abilities to return to school this semester. We have no idea when this will end, or when I'll be out of the hospitals... We have no idea when I'll fully recover.

So on the negative side: I lost out on a semester possibly
Good side: I bounce between MA and PA, maybe down to FL and live? for four months before the summer semester starts.

I will find the silver lining. just try me.
Meanwhile, I'm here in a small room, going absolutely crazy

(PS -- I have had millions of calls, texts, emails, and other forms of contacts.... i have yet to return any of them, please be patient with me. when I'm back on my feet, you'll know what's up.)

Love ya,

B

Pulling the plug...

After another week of vomiting, being bed ridden, losing weight, and losing some of my mental stamina, I decided to pull the plug on the SAHA.  In general. I have been in bed since mid November, missing lots of hours of my internship, and the last weeks of my semester classes.

On top of that, I've bounced between Dana Farber Hospital, NYU hospital, and Doylestown Hospital. Although I did have a response to the drug, there comes a time in many refractory patients lives where they have to ask the question - to themeselves:


Do I have a quality of life here? 

The truth, the reality is, we know I will never be cured. So, we try with all our might to manage what time I have left here, with specific treatments. To me, laying in bed, vomiting, watching TV everyday, and sleeping 24/7 is not a quality of life.

My weight is also tettering at around 100lbs which is scary in itself if I were to have some kind of infection, I hardly have any reserves or anything to fight back with. So, the decision was made yesterday, that I will discontinue the Verinostat (SAHA), it's even hard to believe in 2 months I lost 20 lbs -- to me, it makes the choice a lot easier.

Honestly, I'm weak in many ways right now physically and emotionally. But will hopefully have enough time to rebuild my body for the next tretment (SGN-35), which poses some pretty horrific side effects as well. SGN has a side effect known as neuropothy, several of my friends who are on it now can hardly feel their feet, legs, or hands, and are almost -- asking to be put in a wheel chair.

Slowly, I'm learning, that I'm losing my motivation for treatments, and pondering how much more my (our - other refractory folks) can take. It's sad that when I'm not on any treatments, I feel absolutely wonderful. But, once I have to take a dose of something, my body violently reacts to it.

I know I am here, I know I should be thankful.
But how far would you go, to stay alive?
How many drugs would you take, just to lay in bed everyday?

These questions unfortunately keep arising.
So, that is the news for now. Off the SAHA --
onto the new treatment most likely in late February or March.

Hope you all are keeping warm.

B

Quickie

- Saw Dr. O and team today, received fluids, long day, but productive
- It appears vomiting is under of control, and we have a firm grip on 'plan nausea.' For this cycle.
- I start cycle three tonight. send good thoughts.
- There was a shift in drugs due to my body mass (now one hundred and five pounds).
- I am by no means anywhere near sixty percent back to normal.... but, I'm slowly starting to rebound. slowly.
- My family is probably the best, strongest, most incredible family I've ever watched in action.
- I am so, so, supported and grateful.

Let's hope for a smooth cycle.... three was always my number on my basketball jersey's when I was young, it's gotta be lucky ;)

Sending Love,

B

SAHA update

Hope everyone had a lovely holiday. As for me and my family we spent the  (two weeks) & the week of Christmas in NYU hospital as I was admitted after my scan on the 21st due to dehydration, off liver enzymes, weakness, weight loss (107lbs),vomiting, high kidney functions and the list goes on.

The experience at the hospital to say was incredibly horrendous: our first night our floor did not have any heat, therefore all of us sleeping in our coats, hats, and gloves. On top of it, we had no idea we were going to be staying at the hospital for a week which equals no clean clothes, toothbrushes, or even showers in the rooms. Personally, I'm going to erase these memories from my mind, and focus on the one major positive that did come from going to New York this week. 

The scan with this drug reported a thirty percent decrease in my disease. So, obviously, we cheer for that. 

After fluids, antibiotics, head scans, liver scans, whole body scans, and running of cultures, NYU finally released me. I'm home for now, trying to rebuild my body. Today is the second day that I haven't had a fever, and the first day I haven't thrown up (lets keep our fingers crossed).  I go back to Dr. O'conner on Wednesday morning to hopefully clear up this entire mess. I've been off the drug for about two weeks -- I'm allowed one more week off.

My hopes? O will help me figure out how to have quality of life on this drug since I've been bed ridden for almost two months.  That there will be a dose reduction, somewhere since I've lost so much weight. And that somewhere along the line.. I get to return to my life in Boston. 

Hope with me.

Sending Love,

B

Welcome & Thank you...

Now that I've switched back to private, I have the wonderful opportunity of being more myself, as well as sharing more detailed information. I know you are all excited :)

Before I continue though, I just want to thank all of you who did write to be added, and the incredible and beautiful support you sent through all of your e-mails. I am always, always, blown away by how many people are out there that share a connection with this disease, or just simply are cheering from different parts of the country for successful treatment. I thank you, I'm grateful for you, and all of you, your e-mails, comments, phone calls, gifts sent in the mail (JessieO), and heartfelt words of encouragement.  When I feel as though I'm in this dark place -- and I know there is light somewhere, it is always the kindness of others that helps me see past everything that is blocking my vision.  So, again, thank you. I wish I could personally write back to each one of you... some day I hope to, but please realize your small act of kindness truly helps me focus and dust myself off.

As many of you have suggested, I am trying to just 'be' in the next few weeks. I am focusing on rebuilding my strength emotionally and physically, and hope that the new year leads to a more balanced life-style and mindset.  I hope it is for all of you as well...

The next news (scans) will be the week of December 21st, and we're obviously hoping for good news that this new clinical trial is working -- but if not, we will figure out something else. However, we'll cross that bridge when we get to it. Luckily, classes end next week, and although I'm sure I'll have to take some extensions at this point, I'm okay with this and feel the need to pat myself on the back for still standing while juggling four classes, interning, and treatment.

Lastly, for a treat. One of my very favorite Lesley loves sent me this a while ago, but, it just seems like a perfect letter to share with all of you. Plus, it makes me smile. This is F. Scott Fitzgerald and a letter to his eleven year old daughter during summer camp. Hope you enjoy it.


Dear Pie,

Things to worry about:

Worry about courage
Worry about cleanliness
Worry about efficiency
Worry about horsemanship
Worry about...

Things not to worry about:

Don't worry about popular opinion
Don't worry about dolls
Don't worry about the past
Don't worry about the future
Don't worry about growing up
Don't worry about anybody getting ahead of you
Don't worry about triumph
Don't worry about failure unless it comes through your own fault
Don't worry about mosquitos
Don't worry about flies
Don't worry about insects in general
Don't worry about parents
Don't worry about boys
Don't worry about disappointments
Don't worry about pleasures
Don't worry about satisfactions

Things to think about:

What am I really aiming at?
How good am I really in comparison to my contemporaries in regard to:

a.) Scholarship
b.) Do I really understand about people and am I able to get along with them?
c.) Am I trying to make my body a useful instrument or am I neglecting it?

With dearest love,
Daddy
(August 8th, 1933)




Sending Love,
And a very Happy Chanukah to all my favorite jews :)


B.

I don't feel strong, when my body feels weak.

I think most people can sense by my writing that I haven't been in the most 'joyest' of moods recently. I know that's okay, but it's something that I try to avoid. I always believe that positive thinking and our mentality is a huge part of fighting this battle.

This month I was losing. and I'm trying to come back.

I had too much on my plate. I had too much on my plate for a normal 'healthy' person. Yet, I continually attempt to live a superwoman life, trying to prove to others and myself that this illness does not affect me.

Well, unfortunately, it does.

I've been in and out of the hospital for fluids and blood. Not wanting to take care of myself as much as I normally do, and detesting that I have to be on a trial again, seeing my weight just slowly fade away. It feels as though all the hard work of my summer and fall, eating, and yoga-ing has just been flushed down the drain. I'm tired. I'm tired of traveling. My Hemoglobin is low. The fatigue is bad. And, I find myself just never getting enough sleep.

I hate to give into this disease, but I feel as though I've lost some of my spirit... somewhere along the way. I admit, it is usually this time of year, three years to my diagnosis during the holidays, right when the chemo started for transplant two years ago, and just about a year ago this month the last clinical trial whipped me so hard, I could not even get out of bed. The pattern is frightening, and the holidays are shadowed by these treatments, year after year.

The thing is, I'm trying. I'm battling myself, and trying to get into a positive mindset. Unfortunately, a lot of personal things have not turned out as I'd hoped (deaths, ending of a relationship, timing of things), and I am having to take extra time off of my internship because I need to really focus on rebuilding my body, eating, and drinking.  Everyone else in the world seems okay with this -- except me. Why after three years, am I still insisting that I can do everything a healthy person does? Without any extra help, time, or accomodations? Why do we feel as cancer patients that we need to endlessly prove that we are the same as everyone else?

I feed poison to my body fourteen nights, out of twenty one days.

Do I get to feel weak already? Is it okay not to keep up with the healthy 25 year olds anymore?

Do I get to feel defeated and not want to DO this anymore?

It is such a difficult thing -- when off treatment, I am sky high happy and relish in the moments without chemotherapy. But, as soon as I begin a treatment, my mind follows the weakness of my body.  If I am throwing up everyday - is this worth it? If I can't get out of bed to see friends and attend school or internship -- is this worth it? And finally, can someone please come here and tear up my superwoman cape because I am so tired of trying to be normal..

I would love any words of advise or encouragement, as I know I need to start thinking on a positive note or none of this will be successful in the interim.

Sending Love,

B

There ain't any candle left -

Warning:
MAJOR KEVETCH:

Although I am incredibly, incredibly grateful for all of the things in my life. I seem to have been burning the candle at both ends, hard, and fast -- and lo and behold. There ain't no candle left to burn at some moments.

So, for the things that I'm grateful for and those that I'm struggling with in this new trial and this time of my life. I thought I'd share, because although most of my life I would like to think are rainbows and butterflies. It can be rough. We all know it. So here is the realist in me, coming out. It's important for other people who are survivors to know that even though you have a positive outlook most of the time. You're allowed to kevetch -- this is hard stuff, and... it's exhausting.

Things I struggle with:

- I need, NEED sleep. If someone let me sleep for an entire month, I would. The exhaustion of traveling, handing in papers, going to class, and being responsible for clients and internship is a never ending battle -- there is no end. Although the semester ends in a few weeks. I continue the internship with extra hours (the internship I LOVE) well through my winter break and through June.  If you've been in the mental health field you know how much this takes out of you. I hate to admit I'm a bit burnt out with only four months in... but, I know now, I did not pace myself well enough. And I'm paying for it at the moment.

- I don't see any type of break. Like a good solid two week break of no class, no papers, no treatment/travel, no clients, no internship, no responsibility. It's not there, I'm not sure if it'll ever be there again (which scares me.) I know I'll be in this internship though a good portion of the summer, and three summer classes... with treatment? I just don't see any time to recover, to bounce back one hundred percent. I'm grappling to find ways to rejuvinate myself, to get myself going again, to recharge myself. I feel as though I lost my battery and no one can seem to find the another one to put in me, so I'm running on fumes until I figure it out.


- I don't have enough hours in the day. Between traveling for treatment, heading to one part of the city for internship and other for school at night.. I'm lucky if I eat, let alone see friends, enjoy yoga, or relax. Where is my free time?

- I've lost my fire. I'm going hard. I'm the first one to admit this. But all the while, when people ask me if I'm doing what I love, there is a hesitancy in my voice. I remember this phase, the phase when I student taught five days a week and had classes at night and knew this would be the most work I'd have to do at the same time in my life. I'm at this point now in my degree. Stretched between the real work and the classroom work and knowing that I will never have THIS much on my plate again, but wondering, how the hell do I get through this? It's like you're being stretched in 5 different areas between four professors, groups for class work, supervisors, clients, co-workers, it's insane. I'm not sure how people truly function in this kinda of twenty-four hour work mode.

- I haven't learned how to leave work, at work. Or school at school. I'm thinking too much. And my body craves yoga and is threatening to end my life if I don't return to the studio some time soon -- but when? When will there be time?

- To top everything off, and most of the underlying sadness and exhaustion is from losing people. These last few months we did not only lost Eric and Adrienne, but my uncle suddenly passed away, leaving behind my five young cousins, his wife and the rest of our family.  And this month is a year from when my dear friend Scott Reeder (another Cancer survivor) passed away... thinking of those memories. It's all very difficult. And although I thought I gave myself some time? To grieve it was not nearly enough. It's all catching up with me. Which makes complaining, burn inside me -- because, at least I'm here. At least I have room to complain, right?

Grateful:

I am basically grateful that I get to complain about all of these things. I'm grateful that I'm complaining about a busy schedule opposed to no schedule, that I have clients opposed to no clients. That I am having a life aside from my illness. This irritating illness that sucks out so much energy from me I wish I could strangle it. I hate coming to a certain point of the day, knowing I have nothing left because of fatigue, low, energy, or that I haven't kept myself hydrated enough. I hate how I can't make time for friends, because eating and sleeping are more important right now.

Above all, I'm grateful that I am a type-A perfectionist who thinks I should be able to do all of this without any excuses, extensions or help. I know I wouldn't be this far without my stubborn-ness.

I am grateful for my family, friends, and general loves of my life who understand me and don't need to push any further because they know all of this would come out... if they did. And it's better to keep it contained.

I'm grateful for a new-found therapist who I hope can handle all of this.

I am grateful for lots of things. I am.

I just need a new candle, or battery, or something...
Maybe I'll get one for the holidays?

I guess I can only hope.

Sending Love,
B

New Treatment. New Battle. Here we go!

This will be short and sweet. After a few false starts to different treatments, I have begun the SAHA + B12 trial that Dr. O'conner at NYU is in charge of. There have been good to decent responses, and in his eyes, this is a good drug for me at the moment.

The drug of my choice: SGN-35, will not be open in NYU till February or later. So, the SAHA will bridge me (hopefully) till we get to the spring.

So how's the cancer? Eh. It's not that great. But, I'm still here, kicking butt, four classes, internship and all. Let's just say, it's spread. a lot. And we hope it shrinks. a lot.

So schedule. Oy vey, is this one gonna kill me. Try fitting four visits to NYU in your overloaded Master's level semester? In november, I see Dr. O and Zain on November: 11th, 16th, 25th, and 30th. 
So send some good vibes those days, as most likely I go in on a 5am train, and head back on a 5pm train all in one day.

After that month. I come back once every three weeks. (not too bad)
We scan on December 21st, if it's good. It's good.
If not, we have a back up plan. so, no worries.

The drug is oral. So, ten pills a day for two weeks. Then one week off. Not too shabby.
So, let's hope for little to no side effects, for me to make it through this semester!

And for smiles, I'll leave you with some great pictures of the last few months with no treatment:
Hope you all are well.... and are getting ready for my favorite holiday ever. :) Turkey Day!

Crab shack with favorites, and my little six foot brother :)

Coast Guard Beach with Darrel

Seafood Dinner with D

NYC with the ladies

Feasting in Central Park

Peace in NY

Lock love at Emily and Miguel's Wedding

Sending Love!
B

The answer is Adrienne.

A lot of people have been asking, calling, emailing, stalking :) me about what the next steps are. Just to let everyone know, there is a plan. I'm just not ready to talk about it yet.

There is a huge hole. In the Hodgkin's community. And, I'm just not ready to focus on me yet.. and I'm not sure how soon I will be able to. When I think of my next treatment, or my doctors, or school and treatment, my thoughts somehow or another always find their way back to Adrienne. Although I can't really figure out where I am in this thinking process, I know, that there are a lot of things... I want people to know about Adrienne. Things and ways that don't necessarily have to do with cancer and how she lived with it for thirteen years of her life. Yet, were so softly interwoven between herself, the disease, and her life -- that all of it needs to be mentioned. Somehow.  So, forewarning: Right now, I'm not ready to talk about treatment. I will, soon. But, when you ask me how treatment is. My thoughts and heart, go directly to Adrienne. How, she should still be here. How, in one way or another Alison and her saved my life. How, Adrienne has probably saved more lives than she could've ever comprehended. And, for that, and for so many other reasons. I wish she was here.

Adrienne showed the Hodgkin's community what to do, and what not to do. And because of her actions, she saved lives. Not many other people get to say that. On top of it all. There were so many other things about her, that... weren't shared.

So, these are the things, I want to share with you about Adrienne. Things that I miss. Things that I will miss. Things that, stick out in my mind when I think of her, power walking through the blocks of New York City, and the moments in Miami where I found out she was a shopaholic at heart.  These are some of my thoughts about one of the toughest girls, I know I'll ever meet in my life.

My thoughts of Adrienne...

The phone calls.  I think on more of a weekly or monthly basis these are the times I will miss hearing her chomp on the phone the most.  When, I call to ask Alison how her and Adrienne are doing, and Alison describes symptoms or what their next steps are, and hearing Alison say "And, we're trying to get more weight on her... she's eating... an english muffin, or matzoh ball soup, or something else." Then she'd put A on the phone, and sure enough, confident, and self secure, Adrienne would assure me that things really weren't that bad, and she was trying to just figure out how to fit a ridiculous amount of treatment or doctors appointments in between classes.  It was here, I took Adrienne's lead, and applied it to my own life.  People wonder how I do it. They wonder how I am doing four classes, twenty five hours of internship, relationships, ect. They wonder? I want to answer with: Adrienne. Adrienne is how I know I can do this. Because, across the country chewing on an english muffin, she was doing the same damn thing.

Adrienne always wanted to do things her way -- the right way :) I was never dishonest with Adrienne, and I believed she was always a 'give it to me straight' kinda attitude. From her discussions on Psychology and wanting to get a PhD the RIGHT way :) to, eating Sushi -- not fake sushi, like I ate. But REAL sushi... something, outside of the 'california roll safety zone.' Adrienne always spoke her mind. And, she told you straight how she felt about a person, food, or the path she wanted to take and how she wanted to take it. Although I may not have agreed with everything A said, she had more chutzpah than most people I know have in their pinky finger. It was amazing to watch, and beautiful to listen to.  There aren't many other young women out there that I know, were/are so outspoken. But, Adrienne never felt as though she had to back down, once her mind was made up. I always knew, her honesty would be right there with her, everytime I saw or spoke to her.

Adrienne was a foodie. A foodie, that I probably can't even justify or articulate into words because, I am not even close to her or Alison's level of knowing what good food is or what resturants to try.  Although I only ate a handful of meals with A, I always knew that between her and Alison -- I would be eating something great, new, and at a place I'd never forget. I treasure those meals, and remember them more than most, when I've eaten with other people. It's nice to associate memories of good food, with fabulous people. I wish everyone had the opportunity to do this...

Adrienne was a babe.  More specifically she was a nerd  and boy magnet. I loved this part of Adrienne because, she knew. She knew what guys she didn't want in her life, and she knew what guys she wanted to stick around. And she knew, somehow without much wavering, how she wanted to handle them, school, and this disease.  It was amazing watching and hearing her date young men, their reactions, how she thought some of them were just plain 'duds' and how she wished some would get their 'acts' together, already! I loved that in the mix of all her treatment, school, and what some people might think of.. having the weight of the world on her shoulders, she was able to totally break hearts on the side too. I knew whenever we were able to talk about boys, I was in for a huge laugh.. She didn't understand most men. Just like the rest of us! But the ones she did, she held on to -- and seemed to make it very clear, she wanted more.. more of life.. more of challenging conversation.. and more of someone to mentally keep up with her. Because on top of everything else about A, she was incredibly intelligent and quick.  And, those boys needed to be able to keep up with her, if they wanted to be in her presence.

There is more, much more.. but for tonight. I'll leave you with this. These are the pieces of a woman, that I honestly, did not know too much about, but knew enough to enjoy her. Knew enough to admire, and to base my actions on her actions. These are the pieces, I hope you gather, and think about, when you think about Adrienne. And when you wonder, how I've done this so far.. how I managed to create this life between the cracks of cancer. You'll know, the answer is Adrienne.

And for that, I will always be forever grateful.

Sending you love,

Bekah

Adrienne.

Adrienne passed away on Thursday,
with her and Alison, being so very close to my heart,
at the moment I have no words.

We will all miss her dearly..
Memories of Adrienne

- B

Bad news bears.

After a quick check up at DF, for a PET/CT scan to assure that the Doxil did it's job, we were a little surprised by what the scan showed.

Unfortunately, after only a month off treatment -- I have lots of increase with more nodes, and disease above and below the diaphragm yet again, with multiple nodes ranging from 1-3.5 cm in diameter. I expected some increase, but not quite as quickly, as my disease is progressing...

So, alas, my fellow friends and family -- I will be returning to you all, and writing a little sooner than anticipated. During October I will be focused on finding a new trial (most likely in NY), and figuring out once again how to juggle life, class, internship, friends, and treatment.

Most likely the first week or two of November, I will begin somewhere, with something. So, stay tuned.


For now, I'm going to enjoy the next six weeks as best as I can.  I can say, I am damn lucky, though on several accounts:

1) By the time I start a new treatment, I will have three months off from any drugs. That is a 1/4 of a year, and had an A-mazing time at that. I am so grateful that I was able to rebuild my muscle mass, find yoga, and get myself and my energy started up to enter in this new treatment.

2) There are a lot more options now, then there were last fall -- clinical trial wise. I am always, so, so grateful for choices and options.

3). My internship, supervisors, classes, staff, and peers are being amazing about supporting me through this next trial, while I attempt a 25 hour internship, four classes, a social life, and treatments. How lucky am I to be surrounded by people who understand, and help?

4). I'm alive. I'm here. I'm helping. I'm doing good work. And in general, I haven't been this happy in a while, now that I am finally back in the field, being with kids, and sucking all that i can out of each and everyday.


I know some might be disappointed by this news, as we did think I would be able to take off till mid/end of December. But, hey, at least I got some time off, and at least I'm here, with options in front of me, enjoying my life. And for all of this, I am grateful.

If time allows, please visit Adrienne's blog again (post below) to continue to send prayers, positive thoughts, and warm, comforting vibes to her and Alison as they are fighting tooth and nail for A's counts to come up, and chemo to begin working on these tumors.

Thinking of you ladies - everyday.
Thinking of all of you, lots.
Hope everyone is doing well.

Signing off till late October,

B

Love for Adrienne

Although I claimed to stay away from my blog and updates (and I will, for myself), I needed to take some time today to ask you all a favor...

A dear friend, Adrienne, (the beautiful woman in the middle of this picture)

....who has been the inspiration for my treatments in the clinical trial world, and her mother, Alison who has been a huge medical advocate for me and some many Hodgkin's patients are having a difficult time right now. Although Adrienne has had Hodgkin's for more than half her life -- She is leading a wonderfully colorful-good quality of life (just as I) thus far; therefore, when she was recently admitted to the hospital and now is in the ICU, it was a complete shock to most (especially Adrienne herself, and her family), as we were all just power walking through NYC together two weeks ago.

I ask for you, today, with everything you have. To please send your love, thoughts, and positive prayers to this amazing woman. She is not only a dear friend, but a pioneer in the world of Hodgkin's Cancer treatment everywhere. As she has taken the first steps... for all of us. Into new treatments, new trials, and a new-possible way of living.

And if you have enough love, to give more today -- please stop by her blog. Click HERE. And leave Adrienne and her family, a message of support. Adrienne and Alison are warriors on their own, but even warriors now and then need our love and positive thoughts of support.

Again, please continue to check Adrienne's blog for updates, as they are taking things a day at a time, and our hope is she will be out of the ICU and home with her family, as soon as possible.

Love,

Bekah

Hiatus

It has taken, a heartbreaking passing of another hodgkin's warrior, to take some pause and put some of my thoughts into perspective....

Eric, passed on August 9th. A kid who completely blew us away with his smile, and his legacy of living life to the fullest.

In addition to Eric's passing, and my oncologist team confirming, that my disease is small enough to receive a break from treatment. I decided to slow down even more, smell the roses, the sunflowers, the raspberries, the mangoes, and the classroomwalls of Lesley University, and my social justice internship... and put cancer, treatment, and hospital visits, on the back burner for a few months. And focus appreciate, every thing/one else in my life, instead.

Which in turn, gives me hope that you turn to those you adore-

things you love to do-

and appreciate the gratitude you have in your heart of your life.

I've decided to fully dance on the edges of new beginnings.

And for the next few months, that is what I plan to do.

So, farewell for now -- I am taking a small hiatus from my blog.

But will venture back here, to share all of my new beginnings (most likely a new treatment as well), come the early months of Winter.

Sending each of you laughter, strength, integrity, kindness, wisdom, empathy, excitement, compassion, tolerance, euphoria, perspective, warmth and patience.

And above all. Love.

Bekah

Can I get a 'hell yeah?'

First, I just want to say -- I LOVE sharing wonderful news with all of my family and friends. But, this does not mean I am naive of how short-lived this good news can be, nor the fact that a lot of my fellow warriors are still in the trenches themselves. Before I begin my own update, I just wanted to take a moment to send some love to four hodgkin's survivors who have supported me in some form over the last few years, who are still facing some battles (however, are totally finding their inner strength to keep moving forward). If you have a moment today, please visit these fellow warriors' blogs:

* Adrienne who is having difficulty with pain management, and looking for new treatment as she proceeds down the clinical trials track, please send her love and pain-free positive thoughts.

* Hillary, who recently had a biopsy done after her second transplant, which revealed her cancer has returned and is now starting another treatment protocol. Please send her words of encouragement as she prepared to undergo another treatment plan.

* Chris, who recently relapsed after his tandem SCT and is starting the SGN-35 Trial today. Here's to a smooth transition Chris, with minimal side effects.

* And Eric, who has kicked the Hodge to the curb, but doctors are suspicious of him now having a blood disorder (aplastic anemia) in which he is now receiving treatment (ATG) for -- and experiencing not-so-fun side effects. Please leave a comment for Eric and his family and they are now battling another disease..

Sending love to all of you...

-----

So... onto the Bekah update! I received a CT scan yesterday after just barely two cycles of Doxil. And the reports, came back wonderful! The Doxil is working! Which is cause for celebration. To break it down for you, I have three major tumors in my body (the other two are small outside spleen lesions, below 1cm in diameter) that were managed throughout the last year. These nodes shrunk... as the evidence is all in the numbers :) My lymph nodes are measured by centimeters. The numbers in Green are from my May scan, the numbers in PUPRLE are from yesterday's (August) scan.

Portacaval lymph node : 1.8 x1.7cm verse 1.2 x 0.8cm

Mediastinal Node: 3.9 x 1.5 cm verse 1.8 x 1.3cm

Right paratrachael node: 3.4x1.8cm verse 2.1x1.6cm

As you can tell there are significant decreases in these nodes. After speaking with my oncologist he believes that after another two infusions (cycles of Doxil), that the nodes might be so small -- there might only be scar tissue left. Therefore, my next scan will be a CT and PET scan. The PET scan measures metabolic activity (cancer hot spots), so if those nodes do not light up -- that means, there is only scar tissue left. But, let's not get too ahead of ourselves.

This scan is great news! It means my disease is still very responsive towards treatment. Therefore, we will do two more infusions, and scan again to see where we are at the end of September. I will be meeting with the lovely and famous Dr. O'Conner next week, which coincidentally will be on the same day Adrienne and Alison will be there! So, we will be having a party in Dr O's office and then a meal somewhere in NY, as I can't wait to see the girls again! And they will get to meet the moms this time :)

During our meeting, I hope to gauge our next steps after Doxil. It appears if this treatment continues to do what it's doing -- I will get some time off after theis next set of infusions. Possibly 1-3 months off of treatment. No drugs, no chemo, no side effects for 1-3 months! How AMAZING is that?! And to discuss when to scan, again. Because, as I've said before -- most likely my disease is not curable. It will come and go, for years on end. Now we have to balance when to treat and when not to treat. And, how much time we allow my disease to grow back again before we put a next set of treatments in place. In other good news... though, this means full steam ahead with three classes and a fall internship starting in late August.

However, for NOW. I get to celebrate. The treatment is working! The cancer is shrinking! and I am feeling great! Right after I got my scan news, I seized the day and bought cheap Jason Mraz tickets and dragged Amy and Mandy out with me to celebrate, right on the water, at an outside venue in Boston, with beers in hand...

It was a great night -- and yet again, I could not stop smiling :)

Again, I can't thank you all enough for your words of support and love these last two months, with the new adjustment of treatment. I hope you take my good news, and celebrate this in your life as well! As you all have contributed so much to my happiness too :)

Cheers!

Sending tons of Love,

Bekah =)

Smooth sailing...

Hey all -- Still here =)

Treatment has been uneventful thus far(thank you, all higher beings up there!). However, I've had a cold for the last three of four weeks, as my neutrophils kind of bottomed out a bit more than we wanted, after the first infusion. But, the cold has honestly been more irritating than harmful. I've been coughing up a storm through dinner conversations and classes -- and feel horrible about it. But, I've gotten through my July weekend classes just fine... and have been enjoying time with friends, and a new found love of Dahn Yoga.

I was able to drive myself to and from chemo during this infusion, with no rough side effects to speak of. So far -- very smooth sailing. I've finally gotten my cough/sinus/congestion under control from anti-biotics, and other sinus relievers. And, was able to enjoy a weekend without class, great college friends in the city.... and tons of sunshine!

As for the medical side of things. Some important appointments have been scheduled: A CT scan before my third infusion (to see if the Doxil is doing any damage to the cancer). As well as an appointment/'check-in' with Dr. O'Conner (Hodgkin's specialist in NY), to review what I've been through this year, and see what else is out there for future treatments. This will all take place before a-hopeful third infusion of Doxil on August 11th.

But mostly, I am enjoying the slow & calmness of summer, before my fall kicks into gear mid-august with my internship, and classes to follow in september. Thank you again, to family and friends who have called, sent words of support, FLOWERS ;) , and just tons of love and questions my way to see how I am doing. I appreciate every single one of you. And, just could never thank you all enough to help me adjust to this new treatment.

Here's to all of you, for making me smile... so wide.

Sending Love,

B

Thank you, Doxil.

After Tuesday's infusion, I layed low for a few days. But, to be completely honest it was a painless chemo and I was up and at 'em again this weekend, celebrating the 4th -- just like everyone else =)

I don't want to jinx this treatment -- however, I think you can tell how I tolerated this chemo only a few days after my infusion on Tuesday. So, here I am with my beautiful friends Amy and Mandy -- we got a beautiful beach day and fireworks in at Mandy's Beach house in Rhode Island. It was a gorgeous weekend.

Here's to normalcy, despite treatment!

Thank you for the calls, emails, and words of support and concern.

And thank you Doxil, for being so kind.

Next treatment: July 21st.

Sending Love,

B

Blue eyes, you're the secret I keep..

It's all in the eyes. For most cancer patients. For me, I can always tell when my body is rebounding in some form or another by mine. The grey hues come out when my blood counts are down. And, like today, the blue-ness of feeling good, pierces through most pictures. I feel good. I feel ready.

In addition to my eyes, I'm at my peak weight -- 119 lbs today. Slowly, through biking I've been gaining some muscle. And, eating, eating, eating, to prepare my body for this next treatment.

Once again, I'm here.

Ready for battle.

Chemo begins tuesday morning, and a hopeful update for all of you, following.

Hopefully - with NO side effects!

b!

D is for Doxil (and lots of Damn hope!)

Now that my blog is private, it is easier to share specific details. And hope that you feel more safe leaving comments as well -- after teasing through many emails, I've only allowed two hundred individuals to view this site. So, here's the nitty gritty details of our next steps. (Disclaimer: This post contains lots of (medical information) and specifics, it can be overwhelming, take your time to read, think, and process -- I know it is a lot to throw at all of you, but felt you needed to know the details)

It was not easy heading back to Dana Farber after such freedom the last two weeks -- but, it's done now, and the plan of attack is in place.  Just to clear up some things. I was not formally thrown off the LBH589 trial -- but, would be come September.  Therefore, instead of starting a new treatment, new classes, and a new internship all in one month.  I took it upon myself to make the decision to start treatment now.  I have a light summer with classes, and lots of time.  And as some of you know I am the queen for horrible side effects. So, I decided (with my family) to discontinue the LBH, and begin Doxil as soon as possible.  This allows me two months to figure out when my blood counts will drop, how bad the fatigue is, what I need to take for nausea and GI issues, and anything else that decides to rear its ugly head. 

This is the right decision.  Others might try to squeeze out treatments and trials as far as possible -- but at this point in time, I need to have the control over my life, not my disease. During my first two treatments I allowed this disease to rule my life, my decisions, where I lived, and what I did. Now, I need to reverse it.

I have a life -- I am going to live my life, and THEN figure out how to fit the disease and treatment into my life. 

So, this Monday we discontinued the LBH. Which required testing on lungs, heart, blood, kidney function, and liver -- results show all normal! I even increased a bit on my heart levels -- as they are normalizing a bit more since transplant. All good news.

Now, the Doxil. 

Doxil is normally used for ovarian cancer -- but, there have been some research that suggests if Doxil is used directly after the LBH589 trial -- the lasting effects of the LBH plus the Doxil could contribute to a tumor response (decrease in tumor size).  This is what we are hoping for. 

The Doxil will be given on a twenty one day cycle. Meaning, I will have one, three- hour infusion. Then, I will have off for twenty days. This is considered cycle one. My first treatment will be Tuesday, June 30th. Treatment two will be July 21st. Treatment three will be August 11th. However, these dates are able to change due to side effects. Oh side effects! How I've missed you.

So, what are we actually looking at that can happen to me during this next treatment? Doxil is not considered that high in toxicity. I most likely will not lose my hair, or have tanked blood counts. But here are a list of what Dana Farber says I need to look out for:

Side effects of Doxil: 

*facial flushing, rashes on face

* low blood pressure

* dizziness

* severe tissue damage (if chemo leaks from infusion site)

* nausea (boooo!)

* vomiting 

* loss of appetite

* hairloss

* dry, itchy, skin

* GI issues

* blood/marrow suppression (low blood counts)

*mouth sores, mucositis 

And last and not least, hand and foot syndrome. The worst side effect that could occur, in my eyes. Hand and foot syndrome is the painful peeling of hands and feet, sometimes it will decrease within hours after an infusion -- others have had it on and off their entire treatments. Sometimes, lotion decreases the pain -- other times, people are unable to walk, use their hands, or even take hot showers due to the severity of discomfort, peeling, and pain. 

My oncologist says it is 'very unlikely' I will have hand and foot syndrome; however he has seen it. And, since I am the queen of side effects, I need to be prepared for all of this.  Not a pretty picture obviously, but something we have to do in hopes of beating back this disease.  In general, I could have NONE of these side effects, SOME of these side effects, or ALL of these side effects -- we won't know until the drugs hit me. (So cross those fingers!)

Now, to be honest with you about my cancer and its progression. None of this is alarming -- but, there are five nodes (tumors) we are looking at in my upper chest.  Although the LBH first, decreased them drastically, throughout each scan, they have been slowly, ever so slowly been growing.  At this point -- throughout the last year, I took it, because we are trying to manage my disease opposed to curing it.  The LBH gave me a great spring semester, and summer vacation.  And now, we hope this FDA approved drug (Doxil), will have more of an effect on these tumors.  All of them are smaller than 3x4 cm in diameter at this point, and none are in any major organs = all good things. :) 

The game plan: We will do three rounds (cycles) of Doxil, and then we will scan mid-August before my semester begins.  With this scan, there are two schools of thought -- the Doxil will work, or it will not. Most likely there will not be an inbetween. 

If it works, and my quality of life is good -- I will continue for three more cycles (total of six cycles). End somewhere around October, and then take a few months off of treatment.  

If it does not work, we think about adding two other drugs to the Doxil to make it a cocktail.  In this case we would add Gemzar and Navelbine.  Which is a normal protocal for Hodgkin's called GND -- this cocktail is used when other conditioning chemotherapies for stem cell transplant fail.  It probably isn't the prettiest thing ever -- but supposedly, people can have a quality of life on it. 

I know, this is a ton of information -- and I can't thank you all enough, for doing your homework on me :) and reading about these next steps.  I apologize if it is too much information as I know I have been been holding a lot of it back (due to my blog being public), But, now I have the opportunity to truly share the nitty gritty with you (which ain't too pretty sometimes), and rawness of the disease and future treatments, without fear that someone may stumble upon my treatment plan in my professional life.  

All in all, I am ready for this next step. I am ready to (hopefully) beat back this disease as much as possible. I had two glorious weeks away, am in love with my weekend summer classes so far, and am escaping to the New Jersey shore for the weekend... one last attempt of freedom before the infusions begin.  Most likely, for most patients, this drug hardly effects them -- and again, I hope this is true for me.  But, I like to prepare for the worst.  Only, time will tell. 

For now, I am enjoying each and every day. As much as possible. And living out each minute -- again, our goal for plan 'B' is quality of life. Not a cure. We are here to manage this chronic illness so I am able to continue my life.  And, that is what I am sticking to.  We hope the Doxil does a job on these small little tumors.  And we hope that the side effects do not drastically alter my quality of life. And that's all we can do... hope.  So if you have some time -- send some my way on the 30th =) I'd like to have extra, just in case.

hope is the thing with feathers

that perches in the soul,

and sings the tune -- without the words,

and never stops at all... 

Here's to plan B!

Sending tons of love,

B!