I have learned, that no matter how much pain or discomfort you are in. You can still maintain a point of being grateful. And today, since my blood levels were somewhat in the 'good' category. And, I had a few extra things to smile about. I wanted to share them.
Even though, everyday, I write down at least five things I'm thankful for. I don't share them too often, and today, I just felt, they needed to be shared.
Today, I am grateful for:
* Good blood levels
* Some bad-ass CD's i received in the mail from Jessie O , with songs that have never made me cry, in such a soul, clenching, beautiful way. I'm so grateful for you J.
* Filling my two cavities. THANK GOD. no more mouth pain.
* The colors in Boston today.
* The dental assistant that told me I have seriously the cutest hair and glasses she's ever seen.
* The young man that asked me out to coffee, lets re-state that, the hot young man, that asked me out to coffee. In which I politely declined. (I need some Bekah-time boys, sorrrry)
* The silver, absolutely, jaw-dropping, beautiful bracelet that Darcy sent me, engraved. Which again, made me cry. Sisters, my love, that we are. I'm so grateful for you, d.
* My friends in Boston who are bringing me milkshakes, slurpees, and smoothies whenever I allow them. and call and call and call.
* Lowering my dose of drugs! so I can hopefully have a life this week.
* Alison and Adrienne, for showing me, I can do this. I can do this. I can, and will do this.
* Crepes, with brie and mushrooms from coolidge corner.
* A family, who really, truly, cares.
* My moms. my moms. my moms. who fight about how to hang a curtain in my apartment, but will drive six hours to help clean my living area, so I don't feel overwhelmed.
* Cards from women, who make this world worthwhile
* Wearing a scarf around my neck, this fall, and not on my head.
* Finding rock bottom, and still being able to look up.
To cut through the bull, last week was possibly one of my darkest weeks I've had in the last two years. But, I'm slowly climbing out of it. My drugs were lowered, hoping that my blood levels will somewhat allow me to function outside of my lovely apartment. As well as a PET scan has been scheduled for October 31st, to see... what? To see what's going on in this cute body of mine.
For now, though,
let me just be grateful.
This week marks six months post transplant,
and although I am not cured,
I am
still here.
<3 B
Monday, October 27, 2008
Tuesday, October 21, 2008
Sometimes just surviving is a noble fight...
As most of you know, I like to keep tabs on other cancer survivors and warriors who have somehow touched my life. Little, eight year old Michael, has certainly been one of these kind souls. I can't describe the kind of kid, that Michael is, only that he had more fight in him, than most of us do as an adult.
Early April of this year, Michael,
was diagnosed with type B-cell lymphoma.
After months of fighting off blood infections and cancer. Michael and his family, had decided a few days ago to hold off treatment, and let this vicious disease run its course. And, not put Michael, through any more pain.
On days like today, where I lay in bed, and find myself in pain from a trial. Or want to curse the heavens for my hand in life. Or when friends or family members complain about the difficulties in their life. I want to redirect my thoughts, your thoughts.
Michael passed away today. From what I can tell of how his mother spoke of him, he was an incredible kid, with a huge heart, and a fighting spirit. And just because the cancer overtook his body, it does not mean it changed his meaning or purpose on this earth.
So I ask you, on days, you don't want to get out of bed.
On days, when life just seems too hard.
On days, we want to give up -- because we all have them.
Just know, we should keep going, we should keeping moving, because we can.
If you have time, leave a message for Michael's mom on their caringbridge site.
Losing a child is probably the most heart breaking situation I can think of, I know she'll appreciate your support.
<3 B
Early April of this year, Michael,
was diagnosed with type B-cell lymphoma.
After months of fighting off blood infections and cancer. Michael and his family, had decided a few days ago to hold off treatment, and let this vicious disease run its course. And, not put Michael, through any more pain.
On days like today, where I lay in bed, and find myself in pain from a trial. Or want to curse the heavens for my hand in life. Or when friends or family members complain about the difficulties in their life. I want to redirect my thoughts, your thoughts.
Michael passed away today. From what I can tell of how his mother spoke of him, he was an incredible kid, with a huge heart, and a fighting spirit. And just because the cancer overtook his body, it does not mean it changed his meaning or purpose on this earth.
So I ask you, on days, you don't want to get out of bed.
On days, when life just seems too hard.
On days, we want to give up -- because we all have them.
Just know, we should keep going, we should keeping moving, because we can.
If you have time, leave a message for Michael's mom on their caringbridge site.
Losing a child is probably the most heart breaking situation I can think of, I know she'll appreciate your support.
<3 B
Sunday, October 12, 2008
LBH589, oh how I despise you....
To literally cut a long, three week-story, short. LBH589 has been nothing but hell. Emotionally, Physically, Psychologically, just everything has been very, very difficult. And it being Sunday, I am not looking forward to this next week.
To summarize, my schedule at the hospital last week was as follows:
Monday 7am-7pm
Tuesday 9am-12am
Wednesday 9am-2pm
Thursday 9am-12am
Friday 7am-4pm
It was, to put it bluntly, just hell.
Next, were side effects. The LBH itself are two small pills, 40mgs. The dose is taken on a M,W,F schedule. Every single M,W,F. You'd think something as small of a dose as that could not affect your entire body. But, in this case, poison is poison. Whether it be infused, or swallowed. And boy did I get a good kick in the butt, reality wise.
Side effects listed on the trial were: nasea, vomiting, fatigue, GI issues, shivers, fevers, skin rashes, insomnia, anorexia.
I can tell you out of the nine that were listed for 'minimal' side effects, I had eight of them. My doses would start at 7 or 9 am, and four or five hours after my dose I would begin to have flu-like symptoms. The nasea, was the absolute worst, so we tried to focus on that issue first hand. Since zofran (a common anti-nasea drug is not allowed on this study), and compazine (which I'm allergic to) are out of the picture. After dicussing things with my two favorite men in my life (My uncle Jay, and my good friend Darrel, and I think you mentioned it too Alison!), it seems that Tigon (which has been discontinued) and Kytril are working the best.
The GI issues, are ones I wish not to talk about, trying to find a balance between imodium, and Senokot, leaves me shuddering just thinking about. And, pain in my lower abdomen, that makes me want to sleep all day.
And the flu-like symptoms are usually for a straight 24 hours, a few hours after a dose of the LBH. This means, the following day (Tuesday night), I begin to feel better, only then to return to swalloing the pill the next morning, and returning to the same cycle. In addition, I am force feeding myself, as I've already dropped around 5-7 lbs in the first week. Due to the nasea, GI issues, and never being hungry.
There is a lot more, to all of this as well, but those are the nuts and bolts of my treatment so far. This week I will only need to go in mornings of Monday, Wednesday, and Friday. Even though those are just the physical side effects that I've described, being back in the hospital again, surrounded by chemo and cancer, has side effects of its own. But, I'm working through them.
I've realized, it's no longer a sprint, at this point.
But a long, uphill, marathon. To where? I'm not sure.
My hope is that as treatments, and medications are sorted out I will have some kind of quality of life, since all of this week was either spent in a hospital bed or my own. And that the side effects will become more tolerable, as will the idea of being treated... for the rest of my life.
I realize that this is a very 'non' Bekah update, not really explaining my emotions or thoughts. I've just literally had hundreds of emails, asking how I am doing, and what the news was of the new trial. So, I felt the need to throw all of this out there.
On a positive note,
At least there is hairgrowth, to speak of....
Hope October is being wonderful, to all of you.
And wherever you are... you're enjoying fall.
B
To summarize, my schedule at the hospital last week was as follows:
Monday 7am-7pm
Tuesday 9am-12am
Wednesday 9am-2pm
Thursday 9am-12am
Friday 7am-4pm
It was, to put it bluntly, just hell.
Next, were side effects. The LBH itself are two small pills, 40mgs. The dose is taken on a M,W,F schedule. Every single M,W,F. You'd think something as small of a dose as that could not affect your entire body. But, in this case, poison is poison. Whether it be infused, or swallowed. And boy did I get a good kick in the butt, reality wise.
Side effects listed on the trial were: nasea, vomiting, fatigue, GI issues, shivers, fevers, skin rashes, insomnia, anorexia.
I can tell you out of the nine that were listed for 'minimal' side effects, I had eight of them. My doses would start at 7 or 9 am, and four or five hours after my dose I would begin to have flu-like symptoms. The nasea, was the absolute worst, so we tried to focus on that issue first hand. Since zofran (a common anti-nasea drug is not allowed on this study), and compazine (which I'm allergic to) are out of the picture. After dicussing things with my two favorite men in my life (My uncle Jay, and my good friend Darrel, and I think you mentioned it too Alison!), it seems that Tigon (which has been discontinued) and Kytril are working the best.
The GI issues, are ones I wish not to talk about, trying to find a balance between imodium, and Senokot, leaves me shuddering just thinking about. And, pain in my lower abdomen, that makes me want to sleep all day.
And the flu-like symptoms are usually for a straight 24 hours, a few hours after a dose of the LBH. This means, the following day (Tuesday night), I begin to feel better, only then to return to swalloing the pill the next morning, and returning to the same cycle. In addition, I am force feeding myself, as I've already dropped around 5-7 lbs in the first week. Due to the nasea, GI issues, and never being hungry.
There is a lot more, to all of this as well, but those are the nuts and bolts of my treatment so far. This week I will only need to go in mornings of Monday, Wednesday, and Friday. Even though those are just the physical side effects that I've described, being back in the hospital again, surrounded by chemo and cancer, has side effects of its own. But, I'm working through them.
I've realized, it's no longer a sprint, at this point.
But a long, uphill, marathon. To where? I'm not sure.
My hope is that as treatments, and medications are sorted out I will have some kind of quality of life, since all of this week was either spent in a hospital bed or my own. And that the side effects will become more tolerable, as will the idea of being treated... for the rest of my life.
I realize that this is a very 'non' Bekah update, not really explaining my emotions or thoughts. I've just literally had hundreds of emails, asking how I am doing, and what the news was of the new trial. So, I felt the need to throw all of this out there.
On a positive note,
At least there is hairgrowth, to speak of....
Hope October is being wonderful, to all of you.
And wherever you are... you're enjoying fall.
B
Subscribe to:
Posts (Atom)