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
Wednesday, January 27, 2010
Sunday, January 17, 2010
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
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
Tuesday, January 12, 2010
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
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
Wednesday, January 6, 2010
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.
- 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
Subscribe to:
Posts (Atom)