My group therapy is winding down. I was supposed to be finished, but during my last session I was called to a final meeting with the psychiatrist and unexpectedly couldn't handle it. I cried my eyes out about my current situation. I'd realized I'd been exceptionally angry, I guess without knowing what was behind it. The headaches, the nausea, the fear, the steroid bloating, the lack of control over my existence. I needed the cry, but the result was the decision that I needed to actually deal with the cancer for once instead of parenting. Of course my health insurance would only pay for two more visits, and one of those was today. I did not take advantage of whatever I was supposed to do, I dealt with other parenting issues. The anger makes parenting difficult, and brain cancer makes parenting difficult, and I'm making some mistakes I don't like.
I love my daughter. From the second she was born there was a bond like no other. I couldn't take my eyes or my fingers off of her. Everything about her reflected perfection, and for two years I thought she was perfect. She's not. Far from it. And yet I love her and I will until the day I die. Who knows: maybe if I didn't worship her we'd have a relationship. That's part of my crazy, I guess. I want to know she'll be okay when I'm gone. No regrets. And I can't assure it. It makes me angry.
Waiting makes me crazy, bad traffic makes me crazy, slow people make me crazy. But Wegman's makes me happy, especially when they have rotisserie chicken soup and my throat is sore. I want to do lots of things, but without a big giant round face. I miss looking like me. And I miss reading.
Having cancer in my brain is so weird. I feel irrational, but I think I'm scattered just because I'm trying to figure it all out. I function like normal except for feeling tired and weak. I'm very much enjoying my rest, but all the same I'm pushing myself to get extra things done. Especially during this holiday season. I get a light headache on occasion, and heartburn and nausea if I miss my steroid by even an hour. The biggest problem is the worry of the something new and the unknown. Really, I need to lighten up and I just don't know how.
Could you please tell me what I need to do? I want to get everything perfect and I want to get strong. How do I do that?
Thursday, December 20, 2012
Tuesday, December 11, 2012
Journal Day
I'm participating in a focus interview. I think I mentioned it last week, how it was so encompassing and I ended up panicking about it more than a bit. As part of the research I have to keep a journal, and I have to videotape certain things in my life that connect me to breast cancer. Last week I videotaped my book club dinner, because I was having my glass of wine and everyone looked so beautiful and happy. Today I videotaped myself with Jill in Center City after radiation. So they could see Jill's beautiful hair, which is so similar to the beautiful hair I miss.
Now it's time to journal. My first trip to Hahnemann was on Thursday, where I got a course of action for whole head radiation. I will have 15 treatments, five days a week, and then be finished and return to Dr. Fox. On Friday I was fitted for a helmet. I have to try to get a picture of this thing, it's interesting. It's like a net that was molded to the front of my head using just warm water. The techs put tape and measuring devices on it during the treatments. It's not at all uncomfortable, honestly. The treatments are quick and have a taste, like raw peas. I pray that means they're working. The Hahnemann techs are as sweet as I remember and greet me with hugs. I think it's Dr. Komarnicky's influence. She's that sweet.
Just before starting treatment on Monday I had what a 1960s sitcom character would refer to as an episode. I was working on room parent stuff on Sunday night when the right side of the computer stopped working on my brain. I believed it was still there, but there was no way I could make my head see it. Worse, I stubbornly refused to give up my task until the "episode" passed, so I typed half blind, somewhat embarrassed at what mistakes I might have been unable to hide. For the record, the snowman craft is fine and the soup thing sounds great, whatever it is. After however much time elapsed the vision disturbance passed and I was left with a lightly piercing pain behind my left eye, not at all unsimilar to some sinus pains. But somehow more manageable. The final result was that I was unable to fall asleep that night. I am still unsure whether I was afraid to fall asleep or chemically disturbed, or what. I made up for the sleep last night, though. I was so tired. I'm tired now, which was/is expected.
I'm still suffering quite a lot of tears about my recent developments. Despite what I endure I want to LIVE my life, and that means making changes when necessary. Some of my changes are quite difficult if not impossible to make, and yet I feel so compelled to try I will not give up, I vow. Things people put off doing for years because things get in the way, and eventually the things will just keep getting in the way and the changes still have to get done. Maybe if I had time I'd still put off what I need to do, but I feel I lose that luxury a bit more everyday by now.
My birthday is now in less than a month. I'm turning 46, more than halfway to 50. My cousin Ted once pointed out that if we Sterbakovs can make it out of our 40s we're good. So that's my goal! Thanks, Ted. Renee is coming to visit for my birthday. She read my blog last week and bought a plane ticket so she can make me a party. I'm having a party! Fun!
Now it's time to journal. My first trip to Hahnemann was on Thursday, where I got a course of action for whole head radiation. I will have 15 treatments, five days a week, and then be finished and return to Dr. Fox. On Friday I was fitted for a helmet. I have to try to get a picture of this thing, it's interesting. It's like a net that was molded to the front of my head using just warm water. The techs put tape and measuring devices on it during the treatments. It's not at all uncomfortable, honestly. The treatments are quick and have a taste, like raw peas. I pray that means they're working. The Hahnemann techs are as sweet as I remember and greet me with hugs. I think it's Dr. Komarnicky's influence. She's that sweet.
Just before starting treatment on Monday I had what a 1960s sitcom character would refer to as an episode. I was working on room parent stuff on Sunday night when the right side of the computer stopped working on my brain. I believed it was still there, but there was no way I could make my head see it. Worse, I stubbornly refused to give up my task until the "episode" passed, so I typed half blind, somewhat embarrassed at what mistakes I might have been unable to hide. For the record, the snowman craft is fine and the soup thing sounds great, whatever it is. After however much time elapsed the vision disturbance passed and I was left with a lightly piercing pain behind my left eye, not at all unsimilar to some sinus pains. But somehow more manageable. The final result was that I was unable to fall asleep that night. I am still unsure whether I was afraid to fall asleep or chemically disturbed, or what. I made up for the sleep last night, though. I was so tired. I'm tired now, which was/is expected.
I'm still suffering quite a lot of tears about my recent developments. Despite what I endure I want to LIVE my life, and that means making changes when necessary. Some of my changes are quite difficult if not impossible to make, and yet I feel so compelled to try I will not give up, I vow. Things people put off doing for years because things get in the way, and eventually the things will just keep getting in the way and the changes still have to get done. Maybe if I had time I'd still put off what I need to do, but I feel I lose that luxury a bit more everyday by now.
My birthday is now in less than a month. I'm turning 46, more than halfway to 50. My cousin Ted once pointed out that if we Sterbakovs can make it out of our 40s we're good. So that's my goal! Thanks, Ted. Renee is coming to visit for my birthday. She read my blog last week and bought a plane ticket so she can make me a party. I'm having a party! Fun!
Wednesday, December 5, 2012
Pow
This is turning out to be the most harrowing breast cancer week I've had since the beginning of the recurrence. I seem to be focused on my issues and limitations at all times, acknowledging some for the first time. It blows me away to suddenly discover the overpowering changes life has brought to me in the past 18 months. Without too much attention to consequences, I've changed my entire viewpoint on certain aspects of my life, made subtle and strong determinations of what can be changed and affected, and how. I'm trying to live within entirely new confines and often have not taken the time or energy to grasp their meanings.
I've always been bitter about losing my teaching career before having it genuinely start. I never joined the union, never had the tenure track, never had the same group of kids from September to June. I never heard a teacher call, "Mrs. Friedman's class, head that way!" I never had the luxury of buying an item, knowing it would be used for more than a couple months. I never will. I won't experience any of that, or the cameraderie, or the mundane of the day to day in the classroom, the assemblies, or more. It wasn't just a job change for me, it was the recognition of what I'd thought was a calling. Never getting to discover it is my bitter pill. Anything else goes from there. I'll die a wannabee teacher.
Today this is on my mind because I am trying to get social security disability, which marks the permanent end to my career plans. I spent the afternoon explaining my condition and limitations to the kind attorney. Hopefully I even made sense as I rationed out vomiting, trying to hide the images that strike my thoughts on such occasions. It created an epiphany. I cannot teach. I cannot rely on my body to carry through the simplest functions reliably. Several times in the past few months I've sat with my students praying they'd leave so I could high tail it to the bathroom. On other occasions it was all I could do to pretend to stay awake. When did I become struck by all of this information without realizing it?
I realize now that I don't go far to make plans. I want to go, but I temper my desire with my ability. Sure I wanted to have Thanksgiving with my family, not spend the evening in the HUP ER with my mom. I knew better than to count on turkey, right from the start. I've simply adapted. Turkey is not a given, not even presented as beautifully as Jill is able and willing. I want to have a gathering, but I want it to be a well-timed gathering. I can't plan a big party, certainly not on my own. But I want one, because one of my greatest decisions in this age of vanishing future is that I don't want everyone showing up for my funeral and I miss them. If you come by I deserve the hug, wouldn't you say?
Yesterday I met with a researcher for hours as we discussed my life now, how I plan, how I look at breast cancer and treatment options, and so forth. It was me, talking onto a video. I don't know how I sounded, but I know the panic attack that followed the hours I spent. I was typing to my email loop when I felt overcome by the most suffocating feeling of self strangulation. I am going to die. Not in a lifetime, but during what should be my lifetime. I am going to die. The time I have left is nothing. What do I do with nothing. Thank goodness the panic passed. So now I get to think. Is it nothing. Does the time count? My cousin Ben, he never heard of facebook. I'm so glad I didn't miss facebook. Will I miss the next big thing? I watched Philadelphia last weekend. Tom Hanks died, and then AIDS went away. He'd still be alive now. But he missed the big thing. Steve Jobs felt that he was dying at the precipace of the end of cancer deaths. He thought he'd either be the first to survive it or the last to die from it. He sounded retrospective. He'd made peace. Look at me, making these changes to my life. And yet I'm not making any peace. The truth is, I don't want peace in the end. Just more life.
I've always been bitter about losing my teaching career before having it genuinely start. I never joined the union, never had the tenure track, never had the same group of kids from September to June. I never heard a teacher call, "Mrs. Friedman's class, head that way!" I never had the luxury of buying an item, knowing it would be used for more than a couple months. I never will. I won't experience any of that, or the cameraderie, or the mundane of the day to day in the classroom, the assemblies, or more. It wasn't just a job change for me, it was the recognition of what I'd thought was a calling. Never getting to discover it is my bitter pill. Anything else goes from there. I'll die a wannabee teacher.
Today this is on my mind because I am trying to get social security disability, which marks the permanent end to my career plans. I spent the afternoon explaining my condition and limitations to the kind attorney. Hopefully I even made sense as I rationed out vomiting, trying to hide the images that strike my thoughts on such occasions. It created an epiphany. I cannot teach. I cannot rely on my body to carry through the simplest functions reliably. Several times in the past few months I've sat with my students praying they'd leave so I could high tail it to the bathroom. On other occasions it was all I could do to pretend to stay awake. When did I become struck by all of this information without realizing it?
I realize now that I don't go far to make plans. I want to go, but I temper my desire with my ability. Sure I wanted to have Thanksgiving with my family, not spend the evening in the HUP ER with my mom. I knew better than to count on turkey, right from the start. I've simply adapted. Turkey is not a given, not even presented as beautifully as Jill is able and willing. I want to have a gathering, but I want it to be a well-timed gathering. I can't plan a big party, certainly not on my own. But I want one, because one of my greatest decisions in this age of vanishing future is that I don't want everyone showing up for my funeral and I miss them. If you come by I deserve the hug, wouldn't you say?
Yesterday I met with a researcher for hours as we discussed my life now, how I plan, how I look at breast cancer and treatment options, and so forth. It was me, talking onto a video. I don't know how I sounded, but I know the panic attack that followed the hours I spent. I was typing to my email loop when I felt overcome by the most suffocating feeling of self strangulation. I am going to die. Not in a lifetime, but during what should be my lifetime. I am going to die. The time I have left is nothing. What do I do with nothing. Thank goodness the panic passed. So now I get to think. Is it nothing. Does the time count? My cousin Ben, he never heard of facebook. I'm so glad I didn't miss facebook. Will I miss the next big thing? I watched Philadelphia last weekend. Tom Hanks died, and then AIDS went away. He'd still be alive now. But he missed the big thing. Steve Jobs felt that he was dying at the precipace of the end of cancer deaths. He thought he'd either be the first to survive it or the last to die from it. He sounded retrospective. He'd made peace. Look at me, making these changes to my life. And yet I'm not making any peace. The truth is, I don't want peace in the end. Just more life.
Monday, December 3, 2012
How to think
I hope I remember. I don't quite know what to make of cancer in my brain. So many billions of connections, which ones are affected by cancer? Which are affected by meds, and which ones could be attributed to teenagers in the home?
This is new information, personally handed down today in Room 19, where Dr. Fox sat with a Kenyan med student named Laura, and Lorelei, and Jill and my mom. It's the result of my MRI from Friday, which hadn't had me worried enough, apparently. I had been so hungry walking around Penn's campus. Now the Jimmy John sandwich I'd dragged all over town is waiting in my own refrigerator. I got my blood tests in my port today, but no tap for chemo. Chemo will wait.
First, I pay a visit to Dr. Komarnicky at Hahnemann, my old breast rads onc. I'll see her on Thursday. Hopefully I won't require days of prep and I'll begin treatment immediately. I like Dr. Komarnicky and her staff and I know I'll be in good hands. It's even better knowing what nightmares are left behind, but that's a luxury I'll miss. Dr. Fox figures I'll need 10 treatments, but says Dr. Komarnicky could decide on 15. Rads will make me tired, and the hair loss in those areas will become permanent. He didn't list any other side effects, though. When I'm done I go right back to Abraxane, my regular chemo. And that should be it.
But I don't like people's expressions. I don't like my own thoughts. I don't like the worry about my thoughts getting lost in translation, most of all. What is a person without her own brain operating efficiently? You get what you get, but with my genetics I'd been confident enough I'd always have what I needed. Knowing the amount of loss that is possible in there is terrifying.
I guess I should think about that book.
This is new information, personally handed down today in Room 19, where Dr. Fox sat with a Kenyan med student named Laura, and Lorelei, and Jill and my mom. It's the result of my MRI from Friday, which hadn't had me worried enough, apparently. I had been so hungry walking around Penn's campus. Now the Jimmy John sandwich I'd dragged all over town is waiting in my own refrigerator. I got my blood tests in my port today, but no tap for chemo. Chemo will wait.
First, I pay a visit to Dr. Komarnicky at Hahnemann, my old breast rads onc. I'll see her on Thursday. Hopefully I won't require days of prep and I'll begin treatment immediately. I like Dr. Komarnicky and her staff and I know I'll be in good hands. It's even better knowing what nightmares are left behind, but that's a luxury I'll miss. Dr. Fox figures I'll need 10 treatments, but says Dr. Komarnicky could decide on 15. Rads will make me tired, and the hair loss in those areas will become permanent. He didn't list any other side effects, though. When I'm done I go right back to Abraxane, my regular chemo. And that should be it.
But I don't like people's expressions. I don't like my own thoughts. I don't like the worry about my thoughts getting lost in translation, most of all. What is a person without her own brain operating efficiently? You get what you get, but with my genetics I'd been confident enough I'd always have what I needed. Knowing the amount of loss that is possible in there is terrifying.
I guess I should think about that book.
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