Glorious.

This blog started out as a huge release for my feelings and emotions. Unfortunately the last two years, with so many hits, and strangers coming and reading I've realized how much I've reeled myself back and put some walls up. Which is a shame. I love writing, and even as of recent people swear I should collect some of my old writings from here and the board and put them into some kind of memoir.

At this point though, I've narrowed the readers on this blog down to 200. Still a lot, but nothing like before. I miss writing with passion, and talking about the rawness of this disease and my life. I miss it.  I still write everyday on my own. However I can't tell you how nice it is to help other cancer patients with information, or other chronic illness patients with how to go about this life as gracefully as possible.

I watched a lecture yesterday with my brother on natural happiness and synthesized happiness.  The difference? Natural happiness is something more or so expected in our lives that we would definitely be joyful over, ie, winning the lottery, visiting a long-time friend, a graduation. We expect to be happy, we usually get it, our brain is wired that way.  Flip parts of those thoughts around and you find the synthesized happiness. This is how we perceive our situation, and what we take from it -- it lends you to be happy if you are in control of this part of your brain (which he revealed obviously, many of us are not). He gave a great example of a innocent man who had been convicted for life, the man spent around 50 years in prison until DNA proved him innocent. One of the first statements he released was

'I don't regret a moment of it, it was glorious.' 


There are probably a lot of you staring at that phrase and thinking, is he insane? As soon as this lecturer revealed the picture of this man and his quote, I didn't flinch. I understood. To a certain extent, even under the harshest of circumstances we create our own happiness.  Yes, there are things we will get in life (few and maybe far between) that will REALLY make us happy. But the moments that we are living, are ours to own.

Sometimes, I am in a prison. My body is my prison. For months, I was throwing up every meal, my body ached everywhere, I had blood draws almost everyday, and to say I was weak would be an understatement. Flash forward to today: The last two weeks have been heaven. Those two weeks I did not throw up, spike fevers, need fluids, or take extra medication.  Did I do anything crazy? Did I win any money or meet the man of my dreams? Did I land a great job? Or did my disease get any better? no. But I control my perceptions over things. Most people might think I'm crazy. 'So, all you did was visit friends in CT... have dinner with your Aunt and Uncle... have a few lunches with friends.. and spend time with family?' yeah. that is all I did, and it was wonderful.

I won't lie, January-March was a low, low point for me. I couldn't move. I was vomiting 4-5 times a day, at least 20 pills a day, losing weight, needing two units of fluids, tons of blood draws, I was wasting away. But I can tell you, in between -- there was a dinner with my aunt and uncle, a visit with a friend, much TV watching with my moms, and lots of phone calls from friends that kept me going.  I write this because, I truly believe our lives are all about perspective. We will do things and experience things we absolutely loathe, or that are insanely painful to continue on our path. But in my eyes, at this moment, even if you are literally or figuratively living in a prison, there are moments... somewhere.

I gaurentee fifty years in prison ain't no cup of tea. But I also bet, that man left that gated institution with knowledge, friendships, an abundant amount of mental stamina and strength.

So, it is. in many forms about perspective and this different form of happiness.  Will I still be happy when one of my friends gets married, has a baby, or when I finally graduate? Of course. But I will also soak up happiness when I get to have lunch with a friend, when food stays in my stomach, and when my body doesn't hurt for a few hours in a day.

So remember, you do have your natural happiness. Things that will obviously make you happy. But, your synthesized happiness is something you can actually control, it is a lens you look through that can better your life, your relationships, and your experiences.  For me, I always wonder what it would be like to compare myself to my peers... what would each say on our 50th birthday parties?  Because I know there are a lot of my peers out there who 'expect' to get to age fifty, and definitely will not say the same thing I do, if I get there. Can you guess what it would be...

Maybe something along the lines of, 'it was glorious for me too.'


-----
Infusion four tomorrow: positive thoughts for no more allergic reactions.

Sending Love,
B

I'll take it!

Although there was a serious emotional hit from the scans, something has changed physically after this last infusion...

What may you ask? I actually feel (gasp) good.

I have much to update everyone on, as I'm starting to formulate a plan again for life :) and the future. The pieces feel like they're starting to fit together, little by little. Even, if the treatment does not work with the increased dose, I am starting to feel emotionally and physically strong enough again to start  another battle, with a different treatment -- if need be.

To note, things that are going well: I haven't needed fluids in two weeks, I have energy, I am eating more and more (maintaining my weight), my counts haven't seemed to take a hit (yet), I am finally done blood draws on Sundays, so this past weekend I was able to visit friends from undergrad in CT, and spend the entire weekend with them, which has been the best medicine of all. And the most smiles and laughter I've had in a long, long time. 

Things are far, far, from perfect. But, for at least a week or two, I've been feeling good. And, I'm going to ride this wave for as long as it allows.  I leave for NY again for infusion number four on the 27th.  We will pow wow with Dr. O, and determine when a CT or X-ray will be since now we've done two infusions with the higher dose (1.8) instead of the lower dose (1.2). Most likely it will be soon.

For now, its been a calm, lovely, and beautiful week/end with friends.  Friends, who I have never, in my life felt more grateful for...

'In everyone's life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.'

Sending Love,

B

Results

Bad News: My disease has progressed in several areas in addition to new disease. Progression of old disease ranges from .5cm - 1.5 cm.  The largest node is now 5.0 x 5.5cm, above my right hilum. This is the largest my disease has ever been.  I also have new nodes (since transplant) located at the back of my abdomen ranging from 1.0 x 1.2 cm.

Decent news: My therapuetic dose was lower than normal, since the first two cycles were studying the effects of a pharm drug in combination with the SGN-35. That means, they're letting me stay on the trial for a few more cycles to see if the normal dose 1.8 per kgs, instead of the 1.2 per kgs I've been receiving will make a difference.

In other News: I do not have to be back in New York for my weekly visits anymore. Therefore, I won't be here till May 27th, for my 4th infusion. As I had my 3rd infusion (still with allergic reactions) yesterday morning.



'i pray to be like the ocean, with soft currents, maybe waves at times. but, more and more, i want the consistency rather than the highs and the lows.'

B

Oy Vey.

Again, wishing I had better news to relay to you all. But it is what it is...

Monday the moms and I headed to the ER due to major chest congestion and coughing. Luckily, it was attributed to major allergies and sinuses. The X-ray revealed no pnemonia to speak of. Thank god. However, the coughing and other symptoms has prevented me from receiving a good nights sleep the last two weeks, and added antibiotics.

Thursday morning, I arrived in New York City for my weekly check-up.  I had been feeling extra fatigued and light headed but just assumed it was due to my head cold. After several blood tests and my check-up with my NP the results came back and it showed that my Hemoglobin (red blood cells) had taken a huge nose dive as well as my potassium (major lack of elctrolytes).  I could hardly walk, or keep my head up with my numbers all over the place. The rest of the day was spent in the infusion room to receive fluids, potassium, and a unit of blood. We arrived at 9am in the office, and left by 8:30 pm that night -- long day to say the least.

This morning, I headed back there to recive two more units of blood since my levels were so low.  My reserves aren't that great right now, but I'm attempting to hold tight and see where this takes us. For the first time, in a really long time my oncologist team is again feeling that these symptoms do not have anything to do with my cancer, nor the treatment. SGN-35 is not suppose to cause 'counts' to bottom out. So, today, my NP decided to do addition blood tests to see again... where these mystery symptoms (the fevers, vomitting, low counts) are coming from.  We are all feeling again, that something else, or some type of infection continues to rear its ugly head from week to week, and no one can put their finger on what it is. To say it is frustrating would be an understatement.

On a good note, this is the last 'weekly' check up I will have. My visits once a week to New York have definitely taken a toll on myself, my body, and my family and friends -- we are ready for this part of the trial to be over. After next week, I will only have to return to NYU for infusions (once every three weeks).  So, we cheer for that.

In addition, I'm staying at the Hope Lodge througout the weekend and next week. I have received two cycles of SGN, and next Thursday morning, May 6th, I will have my first scan. If the scan reveals stable disease (which we hope for), I continue on this trial, and receive treatment (for cycle three) the next day, May 7th.

This part of the trial has been a long one, I'm grateful and thankful that it is over, and hold onto hope that the scan and future treatments reveal promising news. Thank you all for your kind thoughts, and positive support. I'm not sure how I would keep truckin' along without each and every one of you.

Lastly, I  officially turned 'two years old' on April 22nd. Although, yes, my transplant failed, it is still an accomplishment -- that I'm here -- still kickin :)

Sending Love,

Bekah

Update

I've decided I hate reporting bad news. I love making people smile with my good news. Maybe I am not cut out for this cancer lifestyle -- I'm ready for a new life now please! :)

Alright, here we go, quick and dirty:

• - As easily as the ESR rates came down, they bounced back up (around 80ish). Dr. O said this will be normal, eventually during that second or third week of blood work, we'll chizzle that 80 down to 70 and so on.... I'm putting a lot of faith in him lately, lets hope he's right. We'll find out this Thursday if my ESR has gone down again since I had treatment at the end of last week (the 15th).

•  - I had a mighty rough allergic reaction to the SGN this time around. It was scary. I wish not to discuss it. I'll be pre-medicated during my next cycle, to prevent this from happening again.

•  - My 'feel good week' and no more fevers/vomiting, ended right before my infusion last Thursday. The fevers roared back after I was at the end of my Leviquin dosage (anti-biotics). So, once again I'm being slammed with anti-biotics, IV fluids, fatigue, night sweats, you name it.

The most difficult thing for me, is to taste the sweetness of just... feeling good and then all of a sudden it being taken away.  It appears that every time I have a small glimmer of light, a huge wind just blows it away. I'm trying to handle my emotions in as much of a consistent manner as possible, but I'm not going to lie. It's difficult. When you have good news one week, and not so great news the other. When you feel SO good with blood counts, and then... they dip or crash. Some people have no idea how much their mind really is connected to their body.

I really am trying though, behind all of this I still attempt to be grateful.

These things I am oh-so-grateful for, would be: My family, knowledge that I have the resources to keep me alive as of now, really REALLY good-beautiful-kind hearted-understanding friends who are going with my flow because everyday I feel differently, an amazing team of doctors who literally hold my hand when things appear out of control, a roof over my head, FOOD. I have a lot. I know I do.

It's just when you know there is more... outside of this cancer life. You want it. You want it badly.

I want it.

B

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