Warning:
MAJOR KEVETCH:
Although I am incredibly, incredibly grateful for all of the things in my life. I seem to have been burning the candle at both ends, hard, and fast -- and lo and behold. There ain't no candle left to burn at some moments.
So, for the things that I'm grateful for and those that I'm struggling with in this new trial and this time of my life. I thought I'd share, because although most of my life I would like to think are rainbows and butterflies. It can be rough. We all know it. So here is the realist in me, coming out. It's important for other people who are survivors to know that even though you have a positive outlook most of the time. You're allowed to kevetch -- this is hard stuff, and... it's exhausting.
Things I struggle with:
- I need, NEED sleep. If someone let me sleep for an entire month, I would. The exhaustion of traveling, handing in papers, going to class, and being responsible for clients and internship is a never ending battle -- there is no end. Although the semester ends in a few weeks. I continue the internship with extra hours (the internship I LOVE) well through my winter break and through June. If you've been in the mental health field you know how much this takes out of you. I hate to admit I'm a bit burnt out with only four months in... but, I know now, I did not pace myself well enough. And I'm paying for it at the moment.
- I don't see any type of break. Like a good solid two week break of no class, no papers, no treatment/travel, no clients, no internship, no responsibility. It's not there, I'm not sure if it'll ever be there again (which scares me.) I know I'll be in this internship though a good portion of the summer, and three summer classes... with treatment? I just don't see any time to recover, to bounce back one hundred percent. I'm grappling to find ways to rejuvinate myself, to get myself going again, to recharge myself. I feel as though I lost my battery and no one can seem to find the another one to put in me, so I'm running on fumes until I figure it out.
- I don't have enough hours in the day. Between traveling for treatment, heading to one part of the city for internship and other for school at night.. I'm lucky if I eat, let alone see friends, enjoy yoga, or relax. Where is my free time?
- I've lost my fire. I'm going hard. I'm the first one to admit this. But all the while, when people ask me if I'm doing what I love, there is a hesitancy in my voice. I remember this phase, the phase when I student taught five days a week and had classes at night and knew this would be the most work I'd have to do at the same time in my life. I'm at this point now in my degree. Stretched between the real work and the classroom work and knowing that I will never have THIS much on my plate again, but wondering, how the hell do I get through this? It's like you're being stretched in 5 different areas between four professors, groups for class work, supervisors, clients, co-workers, it's insane. I'm not sure how people truly function in this kinda of twenty-four hour work mode.
- I haven't learned how to leave work, at work. Or school at school. I'm thinking too much. And my body craves yoga and is threatening to end my life if I don't return to the studio some time soon -- but when? When will there be time?
- To top everything off, and most of the underlying sadness and exhaustion is from losing people. These last few months we did not only lost Eric and Adrienne, but my uncle suddenly passed away, leaving behind my five young cousins, his wife and the rest of our family. And this month is a year from when my dear friend Scott Reeder (another Cancer survivor) passed away... thinking of those memories. It's all very difficult. And although I thought I gave myself some time? To grieve it was not nearly enough. It's all catching up with me. Which makes complaining, burn inside me -- because, at least I'm here. At least I have room to complain, right?
Grateful:
I am basically grateful that I get to complain about all of these things. I'm grateful that I'm complaining about a busy schedule opposed to no schedule, that I have clients opposed to no clients. That I am having a life aside from my illness. This irritating illness that sucks out so much energy from me I wish I could strangle it. I hate coming to a certain point of the day, knowing I have nothing left because of fatigue, low, energy, or that I haven't kept myself hydrated enough. I hate how I can't make time for friends, because eating and sleeping are more important right now.
Above all, I'm grateful that I am a type-A perfectionist who thinks I should be able to do all of this without any excuses, extensions or help. I know I wouldn't be this far without my stubborn-ness.
I am grateful for my family, friends, and general loves of my life who understand me and don't need to push any further because they know all of this would come out... if they did. And it's better to keep it contained.
I'm grateful for a new-found therapist who I hope can handle all of this.
I am grateful for lots of things. I am.
I just need a new candle, or battery, or something...
Maybe I'll get one for the holidays?
I guess I can only hope.
Sending Love,
B
Sunday, November 22, 2009
Thursday, November 12, 2009
New Treatment. New Battle. Here we go!
This will be short and sweet. After a few false starts to different treatments, I have begun the SAHA + B12 trial that Dr. O'conner at NYU is in charge of. There have been good to decent responses, and in his eyes, this is a good drug for me at the moment.
The drug of my choice: SGN-35, will not be open in NYU till February or later. So, the SAHA will bridge me (hopefully) till we get to the spring.
So how's the cancer? Eh. It's not that great. But, I'm still here, kicking butt, four classes, internship and all. Let's just say, it's spread. a lot. And we hope it shrinks. a lot.
So schedule. Oy vey, is this one gonna kill me. Try fitting four visits to NYU in your overloaded Master's level semester? In november, I see Dr. O and Zain on November: 11th, 16th, 25th, and 30th.
So send some good vibes those days, as most likely I go in on a 5am train, and head back on a 5pm train all in one day.
After that month. I come back once every three weeks. (not too bad)
We scan on December 21st, if it's good. It's good.
If not, we have a back up plan. so, no worries.
The drug is oral. So, ten pills a day for two weeks. Then one week off. Not too shabby.
So, let's hope for little to no side effects, for me to make it through this semester!
And for smiles, I'll leave you with some great pictures of the last few months with no treatment:
Hope you all are well.... and are getting ready for my favorite holiday ever. :) Turkey Day!
Sending Love!
B
The drug of my choice: SGN-35, will not be open in NYU till February or later. So, the SAHA will bridge me (hopefully) till we get to the spring.
So how's the cancer? Eh. It's not that great. But, I'm still here, kicking butt, four classes, internship and all. Let's just say, it's spread. a lot. And we hope it shrinks. a lot.
So schedule. Oy vey, is this one gonna kill me. Try fitting four visits to NYU in your overloaded Master's level semester? In november, I see Dr. O and Zain on November: 11th, 16th, 25th, and 30th.
So send some good vibes those days, as most likely I go in on a 5am train, and head back on a 5pm train all in one day.
After that month. I come back once every three weeks. (not too bad)
We scan on December 21st, if it's good. It's good.
If not, we have a back up plan. so, no worries.
The drug is oral. So, ten pills a day for two weeks. Then one week off. Not too shabby.
So, let's hope for little to no side effects, for me to make it through this semester!
And for smiles, I'll leave you with some great pictures of the last few months with no treatment:
Hope you all are well.... and are getting ready for my favorite holiday ever. :) Turkey Day!
Crab shack with favorites, and my little six foot brother :)
Coast Guard Beach with Darrel
Seafood Dinner with D
NYC with the ladies
Feasting in Central Park
Peace in NY
Lock love at Emily and Miguel's Wedding
B
Sunday, November 1, 2009
The answer is Adrienne.
A lot of people have been asking, calling, emailing, stalking :) me about what the next steps are. Just to let everyone know, there is a plan. I'm just not ready to talk about it yet.
There is a huge hole. In the Hodgkin's community. And, I'm just not ready to focus on me yet.. and I'm not sure how soon I will be able to. When I think of my next treatment, or my doctors, or school and treatment, my thoughts somehow or another always find their way back to Adrienne. Although I can't really figure out where I am in this thinking process, I know, that there are a lot of things... I want people to know about Adrienne. Things and ways that don't necessarily have to do with cancer and how she lived with it for thirteen years of her life. Yet, were so softly interwoven between herself, the disease, and her life -- that all of it needs to be mentioned. Somehow. So, forewarning: Right now, I'm not ready to talk about treatment. I will, soon. But, when you ask me how treatment is. My thoughts and heart, go directly to Adrienne. How, she should still be here. How, in one way or another Alison and her saved my life. How, Adrienne has probably saved more lives than she could've ever comprehended. And, for that, and for so many other reasons. I wish she was here.
Adrienne showed the Hodgkin's community what to do, and what not to do. And because of her actions, she saved lives. Not many other people get to say that. On top of it all. There were so many other things about her, that... weren't shared.
So, these are the things, I want to share with you about Adrienne. Things that I miss. Things that I will miss. Things that, stick out in my mind when I think of her, power walking through the blocks of New York City, and the moments in Miami where I found out she was a shopaholic at heart. These are some of my thoughts about one of the toughest girls, I know I'll ever meet in my life.
My thoughts of Adrienne...
The phone calls. I think on more of a weekly or monthly basis these are the times I will miss hearing her chomp on the phone the most. When, I call to ask Alison how her and Adrienne are doing, and Alison describes symptoms or what their next steps are, and hearing Alison say "And, we're trying to get more weight on her... she's eating... an english muffin, or matzoh ball soup, or something else." Then she'd put A on the phone, and sure enough, confident, and self secure, Adrienne would assure me that things really weren't that bad, and she was trying to just figure out how to fit a ridiculous amount of treatment or doctors appointments in between classes. It was here, I took Adrienne's lead, and applied it to my own life. People wonder how I do it. They wonder how I am doing four classes, twenty five hours of internship, relationships, ect. They wonder? I want to answer with: Adrienne. Adrienne is how I know I can do this. Because, across the country chewing on an english muffin, she was doing the same damn thing.
Adrienne always wanted to do things her way -- the right way :) I was never dishonest with Adrienne, and I believed she was always a 'give it to me straight' kinda attitude. From her discussions on Psychology and wanting to get a PhD the RIGHT way :) to, eating Sushi -- not fake sushi, like I ate. But REAL sushi... something, outside of the 'california roll safety zone.' Adrienne always spoke her mind. And, she told you straight how she felt about a person, food, or the path she wanted to take and how she wanted to take it. Although I may not have agreed with everything A said, she had more chutzpah than most people I know have in their pinky finger. It was amazing to watch, and beautiful to listen to. There aren't many other young women out there that I know, were/are so outspoken. But, Adrienne never felt as though she had to back down, once her mind was made up. I always knew, her honesty would be right there with her, everytime I saw or spoke to her.
Adrienne was a foodie. A foodie, that I probably can't even justify or articulate into words because, I am not even close to her or Alison's level of knowing what good food is or what resturants to try. Although I only ate a handful of meals with A, I always knew that between her and Alison -- I would be eating something great, new, and at a place I'd never forget. I treasure those meals, and remember them more than most, when I've eaten with other people. It's nice to associate memories of good food, with fabulous people. I wish everyone had the opportunity to do this...
Adrienne was a babe. More specifically she was a nerd and boy magnet. I loved this part of Adrienne because, she knew. She knew what guys she didn't want in her life, and she knew what guys she wanted to stick around. And she knew, somehow without much wavering, how she wanted to handle them, school, and this disease. It was amazing watching and hearing her date young men, their reactions, how she thought some of them were just plain 'duds' and how she wished some would get their 'acts' together, already! I loved that in the mix of all her treatment, school, and what some people might think of.. having the weight of the world on her shoulders, she was able to totally break hearts on the side too. I knew whenever we were able to talk about boys, I was in for a huge laugh.. She didn't understand most men. Just like the rest of us! But the ones she did, she held on to -- and seemed to make it very clear, she wanted more.. more of life.. more of challenging conversation.. and more of someone to mentally keep up with her. Because on top of everything else about A, she was incredibly intelligent and quick. And, those boys needed to be able to keep up with her, if they wanted to be in her presence.
There is more, much more.. but for tonight. I'll leave you with this. These are the pieces of a woman, that I honestly, did not know too much about, but knew enough to enjoy her. Knew enough to admire, and to base my actions on her actions. These are the pieces, I hope you gather, and think about, when you think about Adrienne. And when you wonder, how I've done this so far.. how I managed to create this life between the cracks of cancer. You'll know, the answer is Adrienne.
And for that, I will always be forever grateful.
Sending you love,
Bekah
There is a huge hole. In the Hodgkin's community. And, I'm just not ready to focus on me yet.. and I'm not sure how soon I will be able to. When I think of my next treatment, or my doctors, or school and treatment, my thoughts somehow or another always find their way back to Adrienne. Although I can't really figure out where I am in this thinking process, I know, that there are a lot of things... I want people to know about Adrienne. Things and ways that don't necessarily have to do with cancer and how she lived with it for thirteen years of her life. Yet, were so softly interwoven between herself, the disease, and her life -- that all of it needs to be mentioned. Somehow. So, forewarning: Right now, I'm not ready to talk about treatment. I will, soon. But, when you ask me how treatment is. My thoughts and heart, go directly to Adrienne. How, she should still be here. How, in one way or another Alison and her saved my life. How, Adrienne has probably saved more lives than she could've ever comprehended. And, for that, and for so many other reasons. I wish she was here.
Adrienne showed the Hodgkin's community what to do, and what not to do. And because of her actions, she saved lives. Not many other people get to say that. On top of it all. There were so many other things about her, that... weren't shared.
So, these are the things, I want to share with you about Adrienne. Things that I miss. Things that I will miss. Things that, stick out in my mind when I think of her, power walking through the blocks of New York City, and the moments in Miami where I found out she was a shopaholic at heart. These are some of my thoughts about one of the toughest girls, I know I'll ever meet in my life.
My thoughts of Adrienne...
The phone calls. I think on more of a weekly or monthly basis these are the times I will miss hearing her chomp on the phone the most. When, I call to ask Alison how her and Adrienne are doing, and Alison describes symptoms or what their next steps are, and hearing Alison say "And, we're trying to get more weight on her... she's eating... an english muffin, or matzoh ball soup, or something else." Then she'd put A on the phone, and sure enough, confident, and self secure, Adrienne would assure me that things really weren't that bad, and she was trying to just figure out how to fit a ridiculous amount of treatment or doctors appointments in between classes. It was here, I took Adrienne's lead, and applied it to my own life. People wonder how I do it. They wonder how I am doing four classes, twenty five hours of internship, relationships, ect. They wonder? I want to answer with: Adrienne. Adrienne is how I know I can do this. Because, across the country chewing on an english muffin, she was doing the same damn thing.
Adrienne always wanted to do things her way -- the right way :) I was never dishonest with Adrienne, and I believed she was always a 'give it to me straight' kinda attitude. From her discussions on Psychology and wanting to get a PhD the RIGHT way :) to, eating Sushi -- not fake sushi, like I ate. But REAL sushi... something, outside of the 'california roll safety zone.' Adrienne always spoke her mind. And, she told you straight how she felt about a person, food, or the path she wanted to take and how she wanted to take it. Although I may not have agreed with everything A said, she had more chutzpah than most people I know have in their pinky finger. It was amazing to watch, and beautiful to listen to. There aren't many other young women out there that I know, were/are so outspoken. But, Adrienne never felt as though she had to back down, once her mind was made up. I always knew, her honesty would be right there with her, everytime I saw or spoke to her.
Adrienne was a foodie. A foodie, that I probably can't even justify or articulate into words because, I am not even close to her or Alison's level of knowing what good food is or what resturants to try. Although I only ate a handful of meals with A, I always knew that between her and Alison -- I would be eating something great, new, and at a place I'd never forget. I treasure those meals, and remember them more than most, when I've eaten with other people. It's nice to associate memories of good food, with fabulous people. I wish everyone had the opportunity to do this...
Adrienne was a babe. More specifically she was a nerd and boy magnet. I loved this part of Adrienne because, she knew. She knew what guys she didn't want in her life, and she knew what guys she wanted to stick around. And she knew, somehow without much wavering, how she wanted to handle them, school, and this disease. It was amazing watching and hearing her date young men, their reactions, how she thought some of them were just plain 'duds' and how she wished some would get their 'acts' together, already! I loved that in the mix of all her treatment, school, and what some people might think of.. having the weight of the world on her shoulders, she was able to totally break hearts on the side too. I knew whenever we were able to talk about boys, I was in for a huge laugh.. She didn't understand most men. Just like the rest of us! But the ones she did, she held on to -- and seemed to make it very clear, she wanted more.. more of life.. more of challenging conversation.. and more of someone to mentally keep up with her. Because on top of everything else about A, she was incredibly intelligent and quick. And, those boys needed to be able to keep up with her, if they wanted to be in her presence.
There is more, much more.. but for tonight. I'll leave you with this. These are the pieces of a woman, that I honestly, did not know too much about, but knew enough to enjoy her. Knew enough to admire, and to base my actions on her actions. These are the pieces, I hope you gather, and think about, when you think about Adrienne. And when you wonder, how I've done this so far.. how I managed to create this life between the cracks of cancer. You'll know, the answer is Adrienne.
And for that, I will always be forever grateful.
Sending you love,
Bekah
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