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