Just a quick note, after I ranted, I decided to make some calls to NYU and describe the pain I'm going through (as I've been telling them this for the last month). They, and I both feel that it is time to move on to the drug called Bendumstine. It's the first real chemotherapy (besides the short run on Doxil), I've had since transplant about two years ago.
All I am hoping for at this point is for my fevers and pain to subside...
since they have kept getting worse with each cycle.
The 'B' drug is once every three weeks, for now. The only difference is -- it is a two day infusion. So, one infusion on Wednesday's and one on Thursday's.
I'll be starting next week.
Let's hope this one doesn't tear me down too badly with side effects, as I still feel as though I have little reserves to fight anything back.
If you have been on this drug before, I would LOVE to hear more about it, the change is pretty sudden and I haven't done too much research on it. So, if you have any advice or experience you could share it would be wonderful (post a comment or email me: RebekahFurey@mac.com)
Hope you're all surviving in this heat.
Sending you Love,
Bekah
Thursday, July 22, 2010
Tuesday, July 20, 2010
Work with me.
I normally have 12-14 GOOD great days. Yes, most are in pain. But most of those days, I have enough energy to do something fun with friends, eat out, spend time with the fam, or enjoy time in doylestown.
Today was suppose to be a good day. Yesterday was too. So, was Sunday.
I feel as though, I really take on whatever treatment side-effects/cancer side effects I can with as much acceptance and grace as possible. I adapt, I change my schedules, I do whatever it takes to make those good days, absolutely wonderful. I pack as many friends, family, and 'me' time out of the apartment into those moments as I can. And with 12-14 days, it's felt sufficient enough to endure my 7-9 bad days that follow.
But ever so slowly as each cycle has been going by... my good days are getting slimmer. And this week, when my fevers were not suppose to start till Thursday, they started Sunday afternoon. I want to look up at the sky and just scream ' Work with me here! Please!' I try to handle these clinical trial with as much ease as possible. But when I only get 10 good days, and 20 bad days. My mood shifts. A bit of anger churns in my stomach.
I've followed the rules, I've taken the drugs, I don't push myself, I haven't slumped into a depression, I've let this treatment take my hair, eyebrows, and eyelashes, I've continued to lose weight, yet force feed myself every chance I get (not a pleasent experience). I'm doing everything I can, and this is what good karma gets me? more bad days.
This basically means, I have one solid good week now, and two lousy ones. It's frustrating, and the quality of life is now not nearly as high as it was, or needs to be. The chronic pain, is now an every day occurence. And, I'm not lovin' it.
Scans are next week, I've had one scan with progression, and one scan with a 'mixed' response; however, in my eyes it was still more progression then needed. My guess is I will receive another 'mixed' response (more progression); however, this time the big issue of quality of life, which has kept this trial going for me, is lessening. To me, this means it is probably time to move on to something else.
It would just be nice if something.. a good drug, really worked with me. So I can stop trying to live my entire life in one small week... opposed to a month, like normal healthy people.
I apologize for the rant. I think I'm in a need of a change, and most likely it'll be through treatment.
- Bekah
Today was suppose to be a good day. Yesterday was too. So, was Sunday.
I feel as though, I really take on whatever treatment side-effects/cancer side effects I can with as much acceptance and grace as possible. I adapt, I change my schedules, I do whatever it takes to make those good days, absolutely wonderful. I pack as many friends, family, and 'me' time out of the apartment into those moments as I can. And with 12-14 days, it's felt sufficient enough to endure my 7-9 bad days that follow.
But ever so slowly as each cycle has been going by... my good days are getting slimmer. And this week, when my fevers were not suppose to start till Thursday, they started Sunday afternoon. I want to look up at the sky and just scream ' Work with me here! Please!' I try to handle these clinical trial with as much ease as possible. But when I only get 10 good days, and 20 bad days. My mood shifts. A bit of anger churns in my stomach.
I've followed the rules, I've taken the drugs, I don't push myself, I haven't slumped into a depression, I've let this treatment take my hair, eyebrows, and eyelashes, I've continued to lose weight, yet force feed myself every chance I get (not a pleasent experience). I'm doing everything I can, and this is what good karma gets me? more bad days.
This basically means, I have one solid good week now, and two lousy ones. It's frustrating, and the quality of life is now not nearly as high as it was, or needs to be. The chronic pain, is now an every day occurence. And, I'm not lovin' it.
Scans are next week, I've had one scan with progression, and one scan with a 'mixed' response; however, in my eyes it was still more progression then needed. My guess is I will receive another 'mixed' response (more progression); however, this time the big issue of quality of life, which has kept this trial going for me, is lessening. To me, this means it is probably time to move on to something else.
It would just be nice if something.. a good drug, really worked with me. So I can stop trying to live my entire life in one small week... opposed to a month, like normal healthy people.
I apologize for the rant. I think I'm in a need of a change, and most likely it'll be through treatment.
- Bekah
Tuesday, July 13, 2010
How do you live with chronic cancer?
Between treatment last week, the move, and other odds and ends its been a bit of an emotional week. Sometimes, I just need reminders that we're all doing the best we can do (this includes me.). I wrote this post last spring, and sometimes rereading it, helps remind me of that...
-----
Throughout the last few months, I have been thinking, carefully. About this topic. About the beautiful, kind-hearted , soulful individuals who fall into this unforunate category.
Recently, after disclosing my disease to a class mate of mine, in one of my grad classes. She asked me, so how long do you have to straddle between both worlds, the world of normalcy and the world of disease. When, would treatment be over?
And, without hesitation, I told her never.
Most likely, I will have treatment the rest of my life.
And I began to think, about this population. Knowing, I'm no where close to being the only one in these shoes. That, somewhere, out there, while you are walking the streets. Picking up coffee, dropping your kids off at school, or sitting next to someone in class. You will cross paths with these individuals, individuals like me, who are somehow fixed between two worlds, attempting to survive, to move forward, to live. While managing a chronic illness. You think to yourself, that you could never do it. You could even comprehend, or imagine, what a future of drugs, and tests, and needles could be like. Trust me, I don't want you to.
But, there is also something else that you could never comprehend or imagine either. The drive. The desire. The passion. To suck, every bit of marrow out of life. In a world where people ask, 'how do you see yourself living in ten years?' I want to laugh, at them, and tell them. That, they know nothing. About life. Or the present. Or the beauty of now. I want to tell them, that I know the secrets. I know, more, about this, then them. I want to tell them as they look at my bright blue eyes, curls, and healthy laugh, that they have no idea. They have no idea.
I want to tell them, to stop thinking of three months, six months, two years. I want to tell them, to embrace today. I want to tell them a lot of things.
-
A few weeks ago, I had a dinner, with a beautiful couple in Ohio. The young woman, tried to convey how although she would never wish to have such a devastating illness, herself, or anyone around her, she desired this thinking. The mindset that everyone always 'claims' to have, but truly do not. The mindset, of living each day, till the last minute. And for every second within that minute. The mindset, in which we talk the talk, but trip and stumble when we actually attempt to walk the walk. And, its within these realities, that I realize, this is something, not many people, experience.
I live, with a cancer, that most likely will never be cured.
I live, with a disease, that might one day kill me. Or, the treatment, will kill me.
I live, with this, every day, of my life.
These are my realities.
I endure, pain, and discomfort, and instability, and honest to god, heartbreak, wrenching, tear-your-soul-out-heartbreak. From living with my own disease, and watching, for the last two years, and years to come, the devastation of cancer, illness and death. However, because of these factors. Because of this extreme. Somehow, my head and fragile heart creates another one, to somehow balance my world.
I experience pain.
therefore, I experience, beauty.
Just as my cancer, remains a consistent fear, during most parts of my life. So, does the love, that burns, deep within me, for individuals in my life. It is a deep, dark, secret of mine, but one, I finally wish to share. The notion that, I adore the people in my life, and love them, in ways, I did not even know existed. Therefore, I make it a point, to let, those people -- whether they be the sick, the healthy, or the inbetween. I let them know, how deep, my love, burns for them. Because for me, being honest, showing how much I care, and love, and adore others, calling out their beauty, their perfect uniqueness that no one else in this world can claim -- these are no longer my fears.
In truth, it is only cancer, I will allow myself to fear.
Which in turn, gives me the strength, to embrace
every day, every hour, every minute
and deeply love, every individual in both of my worlds --
as I continue to straddle, between them.
-
Today, I hope you take the time, to hug the ones you love.
B
Recently, after disclosing my disease to a class mate of mine, in one of my grad classes. She asked me, so how long do you have to straddle between both worlds, the world of normalcy and the world of disease. When, would treatment be over?
And, without hesitation, I told her never.
Most likely, I will have treatment the rest of my life.
And I began to think, about this population. Knowing, I'm no where close to being the only one in these shoes. That, somewhere, out there, while you are walking the streets. Picking up coffee, dropping your kids off at school, or sitting next to someone in class. You will cross paths with these individuals, individuals like me, who are somehow fixed between two worlds, attempting to survive, to move forward, to live. While managing a chronic illness. You think to yourself, that you could never do it. You could even comprehend, or imagine, what a future of drugs, and tests, and needles could be like. Trust me, I don't want you to.
But, there is also something else that you could never comprehend or imagine either. The drive. The desire. The passion. To suck, every bit of marrow out of life. In a world where people ask, 'how do you see yourself living in ten years?' I want to laugh, at them, and tell them. That, they know nothing. About life. Or the present. Or the beauty of now. I want to tell them, that I know the secrets. I know, more, about this, then them. I want to tell them as they look at my bright blue eyes, curls, and healthy laugh, that they have no idea. They have no idea.
I want to tell them, to stop thinking of three months, six months, two years. I want to tell them, to embrace today. I want to tell them a lot of things.
-
A few weeks ago, I had a dinner, with a beautiful couple in Ohio. The young woman, tried to convey how although she would never wish to have such a devastating illness, herself, or anyone around her, she desired this thinking. The mindset that everyone always 'claims' to have, but truly do not. The mindset, of living each day, till the last minute. And for every second within that minute. The mindset, in which we talk the talk, but trip and stumble when we actually attempt to walk the walk. And, its within these realities, that I realize, this is something, not many people, experience.
I live, with a cancer, that most likely will never be cured.
I live, with a disease, that might one day kill me. Or, the treatment, will kill me.
I live, with this, every day, of my life.
These are my realities.
I endure, pain, and discomfort, and instability, and honest to god, heartbreak, wrenching, tear-your-soul-out-heartbreak. From living with my own disease, and watching, for the last two years, and years to come, the devastation of cancer, illness and death. However, because of these factors. Because of this extreme. Somehow, my head and fragile heart creates another one, to somehow balance my world.
I experience pain.
therefore, I experience, beauty.
Just as my cancer, remains a consistent fear, during most parts of my life. So, does the love, that burns, deep within me, for individuals in my life. It is a deep, dark, secret of mine, but one, I finally wish to share. The notion that, I adore the people in my life, and love them, in ways, I did not even know existed. Therefore, I make it a point, to let, those people -- whether they be the sick, the healthy, or the inbetween. I let them know, how deep, my love, burns for them. Because for me, being honest, showing how much I care, and love, and adore others, calling out their beauty, their perfect uniqueness that no one else in this world can claim -- these are no longer my fears.
In truth, it is only cancer, I will allow myself to fear.
Which in turn, gives me the strength, to embrace
every day, every hour, every minute
and deeply love, every individual in both of my worlds --
as I continue to straddle, between them.
-
Today, I hope you take the time, to hug the ones you love.
B
Tuesday, July 6, 2010
Explain the pain:
This post is to clarify some things about the treatment I'm receiving: SGN-35. A lot of wonderful people, ask me how I'm feeling. There's never really a perfect answer for this question. Usually I say, "Today is a good day." Or "This is my bad week." I just wanted to clarify what exactly my bad week is, and how this whole process works. If that's okay with all of you :) Also, it's good for other people who are on this treatment to know that these symptoms/side effects are possible.
The treatment is a three week cycle. So, for example this thursday (July 8th) starts Day One of my three week cycle. After my treatment I have my 'Good Weeks'... Almost about two solid weeks that I feel decent enough to do something in 3-6 hours of time, or have movement, hold conversations, be vocal, participate in society, start YOGA (next week!), and basically do AS MUCH as I can in those 12-13 days of time. Then my "Bad Week" hits. This month, it will hit....around July 21-22nd. One of my friends recently said, it just feels like you sounded great a few days ago. And yes, that might be true, but I'm here to try to explain the pain of my bad weeks. When they hit, things dramatically shift. And although I might have a good day in my bad week, it usually means I'm really tired of laying in bed, so I force myself to do things, even with 103 fevers.
So, what does a bad week entail:
- If you have ever had the flu. It is basically like having the flu for a solid seven days.
- I start with high fevers, usually 102-103. Sometimes, if I'm lucky they go down, other times they don't. These are the times people usually don't hear from me... just because, I'm so exhausted in trying to beat down these fevers, that I can't focus or think.
- Vomiting. enough said.
- Pain, I'm here to explain the pain because... oy vey. It hurts. Sometimes a combination of pain meds and muscle relaxants help? But usually I have 2-3 days where I just literally can't move because my muscles and bones ache so much. A lot of people compare this to Fibromialgia, but to the 10th power, and it doesn't stop... until I receive treatment again.
And that's where the cycle ends. This 'Bad Week' ends, somehow Di or my mom drive me into New York, I receive an infusion. And, presto -- my two 'Good Weeks' are back. I hope this clarification helps all of you, so now when you ask I can just say "eh. 'good week' or 'eh, bad week.' Makes things easier for me :)
So, I'm headed to New York on Thursday. Even though the infusion reactions are pretty violent themselves, it's nice to know... I have some good days to look forward to. Some good, BALD, days may I add (by next week) too. The SGN has pretty much destroyed any hope of hair left. So, the buzzers will be coming out next week.
Let's hope I can still rock that bald look ;)
Hope everyone had a wonderful 4th of July.
I'll be posting soon on one of my good days :)
And, showing you this BEAUTIFUL apartment that I am blessed to be living in.
Lots of Love,
B!
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