Big News :)

This is a little bit of shocking news, hence the 'oh my gosh!' gasping face I am posting for all of you... what a difference a week makes!

And by the way, I apologzie, you will all have to suffer with these type of shots, if any, because unfortunately my camera is still in Boston.  So I am unable to shoot pics with friends. Anyway, lets get to the good stuff...

Thursday Diane and I hoofed it back to NYU for my 'check up.' I will have these weekly 'check ups' for the next five weeks, as protocol for the clinical trial. One of the blood tests that is looked at weekly is my ESR or your SED rate, my nurse practictioner defines it as the following:


ESR is a blood test that we monitor with our Hodgkin’s patients.  It is a non-specific test that measures inflammation and in HD it can sometimes correlate with active disease when elevated.

ESR  is also known as = erythrocyte (Red blood cells) sedimentation rate or your SED rate: rate at which erythrocytes settle out of anticoagulated blood in 1hr.  This test is based on the fact that inflammatory and necrotic processes cause an alteration in blood proteins making the red blood cells stick together, causing them to become heavier and more likely to fall rapidly.  The faster the erythrocytes fall the higher the ESR level.

The normal range is different for men and women – for females, a normal 'healthy' range is between: 0-20

So, before treatment my ESR rate was 130, signifying that there was definitely a moderate to significant amount of disease within my body.  But you would not believe the news I received today.... After one infusion, a week later my ESR level was at a 5! A NORMAL range! This test does not ultimately tell us for 'sure' what is going on specifically with my disease, only a PET/CT scan will do that. However, this is REALLY good news for a small blood test, it alludes that although I haven't had any horrible side effects... that this treatment, is definitely doing its work on the cancer.

For now, we hold onto these good moments, and just keep on keepin on..... (while smiling!).

Sending Love,

B!

Blue eyes...

First SGN infusion...

The SGN-35 went as smooth and as calm as I am in this picture just resting. I even feel a bit better after the infusion, and my eyes seem to be returning a bit to their normal hue of blue.  As you can tell, I feel as I'm barely waking out of this bad dream, and I don't want to get my hopes up (too high).

But after the infusion on Thursday, I did not have any adverse reactions, nor more fatigue. We hold onto this. And hope, that this will be a small turning point for some healing in my body and my mind.

Here's to more sunshine, and more blue.

B

Preparing for battle.

The last four months have felt like such a whirlwind, when people ask how I am these days I don't even know how to answer. I have been in four different hospitals, with lots of oncologists, and zero answers.

But now, it is up to me. One of the biggest tools for treatment is your mental state. Mine has been pretty tainted and shattered the last few months, but unfortunately, that can't be an excuse any longer. I begin a new treatment on Thursday, and I have to be ready.

My body is still weak, so my hope is that this will be an 'easier' treatment than my past clinical trials. I can hope, right?

To kick start my week, the vote is in and the legislation has finally been passed for the health care reform bill!  I'd go into more detail this morning, but I think Hillary does a pretty great job putting it in a nut shell. For me, it basically means when I graduate I won't be discriminated against for having a pre-existing condition, but it also helps me in other area's too (capping on health care, Medicare part D which I'm struggling with right now) But, Hillary explains it in her blog, read it, be as thankful as I am. It may not be affecting your daily life, but soon, it will be affecting mine.

[Edit to add: a dear friend of mine directed me to this website, it definitely explains this bill in an easier fashion you can read this legislation, here.]

Normally, I have a huge fire burning at this point before a treatment. But because of all the sickness, and in and outs of the hospitals. Mine is dimming a bit. No worries -- it's still there. I still want to fight. I'm still here. My goal is still to move back to Boston as soon as possible and continue my program. But if there was ever a time when I needed some cheerleaders -- this week would be the week.

The calm before the storm is here, and all I can do now is focus, keep myself cenetered, and tell myself that this will work, this treatment will work, and these symptoms will fade, and this is a good choice.


Here's to good choices, new treatment, and more positive changes...

Cancer must be the answer.

When doctors can't figure out what is going on with you, and you are a cancer patient.

Then, cancer is their answer.

Who KNOWS what is going on with my body. But, no one got to the bottom of anything this week, except that my red blood cells were too low (caused the fainting). So, I received more hydration, blood, and time without dogs barking!

I'm finally home. They put me on an anti-biotic that I was on the last two times I was admitted to the hospital, and will be on this drug until my trial starts on March 25th. While on this anti-biotic, I haven't thrown up and haven't spiked a fever higher than 100.

So, there's no infection, but the anti-biotic works? I have no idea. All I know is that cancer is the answer for all my doctors, and for now... I just nod my head and agree, what else is there to do? I start treatment within two weeks, our hope is obviously that the more damage the SGN does to the cancer, these symptoms will go away for good.

So yes, that is the date. Next week we go to NY for testing, and my 'starting date' for the SGN-35. The first day of SGN of this phase requires a twenty four hour holding period. So, I am admitted Thursday morning to the hospital, receive the drug in the morning (30 min infusion) and then, blood will be taken every hour on the hour for twenty four hours, fun huh? :)

After the twenty four hour holding period, a nurse will then come to my home in PA every other day and take blood until my next infusion (April 15th). Unfortunately, I won't be going anywhere between infusion one and infusion two because the nurse has to take this blood at a very specific time, every other day.  Then, the second infusion is another twenty four hour holding period in NY. And again, the blood work happens again until my third infusion. Finally after infusion three -- no more holding periods or blood draws.

We will have to be in NY once a week for the first six weeks, and then after the six week period is over I will only return to NY on infusion days (once every three weeks).

I think that's enough information to throw everyone today. A lesson in side effects will come up next, I know, I know, all very exciting... try not to jump off your seats! :)

I also received some very special goodies from wonderful people for my birthday.
I'll be posting pics of those gifts soon, so you can all see the amazing people who are in my life, and continue to cheer me on, every day.

Sending you all Love,

B

The devils are back.

This week I was readmitted back to Upenn, it was ultimately my decision but after I fainted and almost brought down some kitchen chairs on top of me, I thought it was for the best.

fevers, vomiting, coughing, fainting, weakness... 

Once again -- no answers.

What a great birthday, huh? Happy 26th to me.

- B

Beat up.

I am trying, so hard to get out of this 'slump.'
Where is my 'rebound' button when I need it? I need it now.

You ever feel as though, -- when it rains it pours.

This is a post about health insurance, and me feeling overwhelmed, and helpless.
How are people suppose to fight when they have to constantly pay millions of money to their health insurance? In addition, how are they suppose to fight when Medicare is only offered to those who had been previously employed around my age (thankfully not me, since I took a job right after college).

How are we suppose to survive?
We found out recently that my 'plan' was not in fact what I was informed. The 36 months of coverage, was actually 18 months, and now I feel like I've taken a few punches to the stomach. Actually, it feels like a whole football team just kicked my butt, and then took a few bats to the stomach.

A stomach in which I, am never hungry or thirsty, and I'm just trying to survive.
Although we have a month to figure this out, I am upset, angry, and sad that this is what fellow survivors have to deal with on top of trying to stay alive.

I am beat up.
Maybe the health insurance companies know it. Maybe someone told them.
Because at this rate, how are we (cancer survivors) who don't have any coverage, or long term plans because they have a chronic cancer, suppose to survive? How are we suppose to keep going, when we have to worry about COBRA ending, and Medicare not being able to cover the amount of prescriptions that I need. I'm no millionare here. Trust me, most cancer patients aren't.

I ask you if you are to comment on this topic, please don't tell me how to handle my policies -- I have family and myself attempting to figure this out. I just needed to vent. We did and are doing the best we can, no one has any idea how hard all of this really is. No one except my fellow, rejected-health care plan, warriors.

Hopefully that 'rebound' button will show up soon, it would be nice.. 

Good Scans, Bad Fevers...

I appreciate everyone's patience, I've slowly tried to sort things out in my mind before I write things down for everyone to read. So, here is the deal.

Last time I wrote, my fevers were subsiding and we were heading to New York to visit Dr. O'conner. I felt GREAT, we left at 10:00 am for NY and did not return till midnight that night. It was a long day to say the least, but I received great news after my scan.

Everyone knows cancer grows, after two and a half months I did not expect a ton of growth but my moms and I definitely expected something. After an hour sitting and discussing future treatments with Dr. O, I finally asked "Well! What about the scan?!" He smiled and said there was absolutely no growth in my disease, in fact, some of the tumors had slightly (ever so slightly) decreased in size. It makes absolutely NO sense medically or rationally -- but hey, we will take this one. After he released this information the moms and I were in total shock, we didn't even know what to do with the information. Dr. O attributes this 'odd' scan to the SAHA (the drug I was previously on). 

This is what I hold onto now, remembering how deathly ill I was those few weeks in the hospital, that this drug did something for me, and its holding my disease, this means my next treatment could really attack my cancer if it's not moving -- these are all good things, this is the silver lining. this is the silver lining. this is the silver lining...

Unfortunately, the trip to NY was exhausting and for a patient who had previously been running 103 fevers the previous two months, stood and talking, and exposed myself for a solid day on trains, cabs, and in Dr. O's office, the next day... my horrible symptoms of fevers and vomitting returned. Which is why you have not heard from me.

Usually it's no news is good news, but once again I've been trying to recover. The 103 fevers returned around the clock, the vomitting followed, the fatigue followed that. Of course nothing showed up again on cultures, x-rays, or any other scans and we knew since the scan revealed no growth that this was not the cancer doing damage. Once again, I was put fluids, IV zofran, anti-biotics, , and I am at the end of my course, thankfully, I'm back on the bike, the fevers once again have stopped along with the other symptoms. We hope, hope, hope, that none of these return after the anti-biotics and fluids are discontinued.

Honestly, we're all tired. The fevers take so much energy, and attempting to put on calories at this point pretty difficult -- but hopefully we've seen the end of the fevers, and the moms are constatly trying to plump me up. I feel strong, my worst fear however is just the return of this infection/virus or whatever it is that was inside me for so long.

Bottom line, we have decided the best treatment for me after talking with Dr. O'conner for over an hour during our consult. After reviewing my options from Upenn, Dana Farber and NYU, SGN-35 is on it's last phase before it will (hopefully) be FDA approved in 2011. There are a lot of details to this treatment, this phase differs drastically from other SGN phases because they need to postively put this together perfectly so it CAN be FDA approved -- this means more monitoring, more blood tests, but this also means, it is highly unlikely that things will spiral out of control like the last trial.

We're shooting for a mid to late March starting date, and I will update again soon with side effects and treatment cycles on my next post.  Again, this feels like it's been a long road... and we're all hoping for brighter days.

Hope all of you are keeping warm, as the sun finally melts the snow and begins to show its face more here in PA, I also hope to be back up and shinning very soon.

Sending Love,

B

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