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!
Tuesday, December 11, 2012
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.
Monday, November 26, 2012
Wow
Last night I was at the supermarket and the full effect of what happened smacked me in the face. Hard. It was like having a flashback, only can it count as a recollection if I'm collecting the information for the first time? So I couldn't wait to get to group therapy this morning to discuss it, and I ended up taking a whole hour to get it out all the way. I always seem to have these problems to which nobody else can relate, but the other patients always do their best to empathize. I'm lucky to have found some very caring people there.
Still, I need an MRI. I talked to my primary care doctor today, and his only advice is to get that MRI. Hopefully very soon. I'm trying not to worry, and the steroids I'm taking are helpful, as usual. I have an appetite at last. I ate a full dinner and I feel fine. If steroids help, can this problem be as bad as I fear? Everyone is trying to convince me I don't need to worry this much. Including Esther. My mother! If she's not concerned, I could probably relax. If only.
Life is no less crazy after my health scare. I still have the same people problems, and I'm giving up hope of ever having them solved. I can't share these details, but at group therapy I'm trying to learn new skills for coping with them. I can only change my own actions and reactions. I can't let the envy of what I'm missing eat me alive. All the positive experiences I won't get to have, all the love I'm forced to inhibit, it breaks me. But I'm lucky to have so many wonderful people in my life. I have to focus on that. I have Jason and Jonah, after all! Who could ever want more? I could. Sigh.
Still, I need an MRI. I talked to my primary care doctor today, and his only advice is to get that MRI. Hopefully very soon. I'm trying not to worry, and the steroids I'm taking are helpful, as usual. I have an appetite at last. I ate a full dinner and I feel fine. If steroids help, can this problem be as bad as I fear? Everyone is trying to convince me I don't need to worry this much. Including Esther. My mother! If she's not concerned, I could probably relax. If only.
Life is no less crazy after my health scare. I still have the same people problems, and I'm giving up hope of ever having them solved. I can't share these details, but at group therapy I'm trying to learn new skills for coping with them. I can only change my own actions and reactions. I can't let the envy of what I'm missing eat me alive. All the positive experiences I won't get to have, all the love I'm forced to inhibit, it breaks me. But I'm lucky to have so many wonderful people in my life. I have to focus on that. I have Jason and Jonah, after all! Who could ever want more? I could. Sigh.
Saturday, November 24, 2012
Update
Last night I couldn't see right again, I had all vision? problems with the dots and the skewed right side. The mornings are better, but my sinuses feel like they're exploding in my brain. The ER docs did do a CT scan on my sinuses, but didn't find anything horrible. This morning I was feeling HORRIBLY sick, when Ken came in with sinus meds and caffeine pills, plus tea and toast. My head just has a light, dull ache right now. I'll take it. I can focus and type, and even see what I'm typing. Nice change!
I might've been confusing yesterday. I went to the ER and had CT scans on my head, but they couldn't tell anything because I need MRIs. I'm still waiting to get those scheduled. The folks at Penn ER were nicer than any other ER folks I've encountered thus far, and I was grateful. Heck, right now I'm thrilled just because my head isn't pounding out of my skull.
The CT scan indicated that I might have cancer in my skull again, speaking of skulls. My guess is they found the healed skull lesions from former bone cancer. But, just a guess. I'm scared when I feel sick like this, and even worse, it makes me completely miserable when Jonah sees it. So I'm also grateful to Donna for sending her son over to get Jonah for play now, and to Joe and Debbie for inviting him later. On that note, I'm especially grateful Jonah has so many good friends with wonderful parents. You're all helping me raise him, and even when I can't be a full-time mom you make me feel like one. Thank you.
I'm not sure what else to do right now when the headache is under control. My choice would be to talk to Renee, but I'd have to seriously limit that. Renee and I are not good at limiting talking! I can't read or play computer games. I'd love to take a shower, but Ken said he'd clean the bathroom for me. If I get in there I'll want to clean it. Especially now that I can handle the cleaner (I had to stop using chlorine cleaners). There's nothing on tv and Jason is the only kid home. I don't think he'd want to hang out with me right now, he's still in his room. So, dare I say it, I'm actually a bit ... bored! I'm never bored.
I might've been confusing yesterday. I went to the ER and had CT scans on my head, but they couldn't tell anything because I need MRIs. I'm still waiting to get those scheduled. The folks at Penn ER were nicer than any other ER folks I've encountered thus far, and I was grateful. Heck, right now I'm thrilled just because my head isn't pounding out of my skull.
The CT scan indicated that I might have cancer in my skull again, speaking of skulls. My guess is they found the healed skull lesions from former bone cancer. But, just a guess. I'm scared when I feel sick like this, and even worse, it makes me completely miserable when Jonah sees it. So I'm also grateful to Donna for sending her son over to get Jonah for play now, and to Joe and Debbie for inviting him later. On that note, I'm especially grateful Jonah has so many good friends with wonderful parents. You're all helping me raise him, and even when I can't be a full-time mom you make me feel like one. Thank you.
I'm not sure what else to do right now when the headache is under control. My choice would be to talk to Renee, but I'd have to seriously limit that. Renee and I are not good at limiting talking! I can't read or play computer games. I'd love to take a shower, but Ken said he'd clean the bathroom for me. If I get in there I'll want to clean it. Especially now that I can handle the cleaner (I had to stop using chlorine cleaners). There's nothing on tv and Jason is the only kid home. I don't think he'd want to hang out with me right now, he's still in his room. So, dare I say it, I'm actually a bit ... bored! I'm never bored.
Friday, November 23, 2012
What's the Effex?
I think I officially hate Effexor. At least I hope. It seems that every time something goes wrong that's the cause. I also don't think my chemo is working anymore. And thinking is not dependable because my brain isn't functioning properly and I have a headache. I don't even know why I'm writing right now, except that I know I worried people this afternoon.
I'm having too many occasions throwing up on the sides of highways. Sorry, I should've issued a warning for that one. But honestly, I'm a mess and the roadways leading to Philly seem to bear the brunt. I asked for Facebook prayers because of my neurological issues, but not exactly pleased with the vomiting, either. For posterity's sake I'm going to list my issues now:
On Wednesday I went to the lovely interfaith service at the synagogue, and it was wonderful like every year. During the dessert that concluded the service, however, I began seeing odd, colorful spots in front of me, and they danced. I left the service too late, and by the time I got to the car I needed Ken to help me with my balance. I fudged a few words and got very upset because I could not get out the sounds I meant to say. I decided to come home and look up possible ailments on the computer, but when I got here I couldn't operate the computer. I couldn't find the right side of the keyboard, and apparently I spoke gibberish when I tried to explain that to Ken. VERY scary. I thought I was having a stroke, but I also had a horrible headache, and I fell asleep before Ken got me any help.
Yesterday morning I woke up and went to the Thanksgiving football game. I couldn't walk up the bleachers, but otherwise I was not in terrible shape. Again, I started having trouble in the afternoon, like with the vomiting on the way to Jill's for dinner. Instead of enjoying turkey with the trimmings with my family, my mom and I went to Penn's ER for the evening. We pulled up and they took us immediately. I didn't wait anywhere, within moments I was whisked into a gown in a single room. My port was tapped, and I was sent up for head CTs. They checked my head and my sinuses, which have been bothering me quite a bit.
My sinuses are fine. My head, not so great. I might have cancer on my skull again, which I've had before, but less likely is a chance there is cancer in my brain. I need an MRI. How would I go from there? This little bit of time I've spent not remembering the meaning of money one minute or my daughter's age the next has been downright terrorizing. How can I not drive? I already haven't been able to drive for two days, what if it continues?
When I got to talk to Dr. Fox this morning I asked, "Are you frowning?" When he's frowning, I know I have to worry. No, he said, he wasn't frowning. He thinks I'm having yet another reaction to the Effexor, but we won't know for sure until I have an MRI. In the meantime he's prescribed steroids. I just took the first one. Suddenly I think I've reached my writing capacity, plus Jonah needs to go to bed, so good night. I hope you all had a lovely Thanksgiving.
I'm having too many occasions throwing up on the sides of highways. Sorry, I should've issued a warning for that one. But honestly, I'm a mess and the roadways leading to Philly seem to bear the brunt. I asked for Facebook prayers because of my neurological issues, but not exactly pleased with the vomiting, either. For posterity's sake I'm going to list my issues now:
On Wednesday I went to the lovely interfaith service at the synagogue, and it was wonderful like every year. During the dessert that concluded the service, however, I began seeing odd, colorful spots in front of me, and they danced. I left the service too late, and by the time I got to the car I needed Ken to help me with my balance. I fudged a few words and got very upset because I could not get out the sounds I meant to say. I decided to come home and look up possible ailments on the computer, but when I got here I couldn't operate the computer. I couldn't find the right side of the keyboard, and apparently I spoke gibberish when I tried to explain that to Ken. VERY scary. I thought I was having a stroke, but I also had a horrible headache, and I fell asleep before Ken got me any help.
Yesterday morning I woke up and went to the Thanksgiving football game. I couldn't walk up the bleachers, but otherwise I was not in terrible shape. Again, I started having trouble in the afternoon, like with the vomiting on the way to Jill's for dinner. Instead of enjoying turkey with the trimmings with my family, my mom and I went to Penn's ER for the evening. We pulled up and they took us immediately. I didn't wait anywhere, within moments I was whisked into a gown in a single room. My port was tapped, and I was sent up for head CTs. They checked my head and my sinuses, which have been bothering me quite a bit.
My sinuses are fine. My head, not so great. I might have cancer on my skull again, which I've had before, but less likely is a chance there is cancer in my brain. I need an MRI. How would I go from there? This little bit of time I've spent not remembering the meaning of money one minute or my daughter's age the next has been downright terrorizing. How can I not drive? I already haven't been able to drive for two days, what if it continues?
When I got to talk to Dr. Fox this morning I asked, "Are you frowning?" When he's frowning, I know I have to worry. No, he said, he wasn't frowning. He thinks I'm having yet another reaction to the Effexor, but we won't know for sure until I have an MRI. In the meantime he's prescribed steroids. I just took the first one. Suddenly I think I've reached my writing capacity, plus Jonah needs to go to bed, so good night. I hope you all had a lovely Thanksgiving.
Wednesday, November 7, 2012
Confusion?
I keep writing posts, whether in my head or on the computer, and then getting rid of them. I have no subject for tonight, but I continue to have that feeling that I'm schlepping around with something stupid and exhausting. For now I'll post an update and see if it provides any relief.
I go to group therapy twice or three times a week. My health insurance pays for a limited number of visits, so I'm trying to space them out to make this experience last longer. This week I went on Monday and yesterday. Working in a group is so extraordinary. If I don't want to focus on myself, someone else needs that focus. I think I'm realizing for the first time that I'm in a heap of doo doo. I'd just been figuring these are my problems, like everyone has problems. But my problems really suck, and there isn't easy advice. It made me feel sorry for myself for a couple days. I hope I'm past that now. I thought it would be no big deal to talk in group, because, after all, I write everything in a blog. However, it feels different when people are hearing the whole story at once and I talk mostly about the part that most affects me. I'm getting advice on what I need, and I find the people to be comforting. I also may like that we're all somehow damaged, and that slowly but surely, people are healing. This place is terrific.
Cancer is bugging me. My chemo break is over already. I had a treatment yesterday, and it seemed to take forever. Not feeling wonderful today, and I'm teaching kindergarten. I feel like my energy continues to decrease, and I don't know why. People ask, "How are you?" and I really have no idea. I answer with a noncommittal, "Okay." Not satisfying to anyone. People continue to be lovely, just taking their anger out on politics, it seems. I'm definitely angry, and I can't identify that, either. But watch out, because I can be pretty moody, and also downright mean. I delete the posts, but the sentiments float in the stratosphere. Maybe I even mean them, but I certainly don't mean them to be public ... or phrased so harshly ... or whatever.
I'm so tired. And I still haven't discovered why I'm writing this blog entry. Jonah wants me to tuck him in. I guess I'll give this a rest for tonight. And me.
I go to group therapy twice or three times a week. My health insurance pays for a limited number of visits, so I'm trying to space them out to make this experience last longer. This week I went on Monday and yesterday. Working in a group is so extraordinary. If I don't want to focus on myself, someone else needs that focus. I think I'm realizing for the first time that I'm in a heap of doo doo. I'd just been figuring these are my problems, like everyone has problems. But my problems really suck, and there isn't easy advice. It made me feel sorry for myself for a couple days. I hope I'm past that now. I thought it would be no big deal to talk in group, because, after all, I write everything in a blog. However, it feels different when people are hearing the whole story at once and I talk mostly about the part that most affects me. I'm getting advice on what I need, and I find the people to be comforting. I also may like that we're all somehow damaged, and that slowly but surely, people are healing. This place is terrific.
Cancer is bugging me. My chemo break is over already. I had a treatment yesterday, and it seemed to take forever. Not feeling wonderful today, and I'm teaching kindergarten. I feel like my energy continues to decrease, and I don't know why. People ask, "How are you?" and I really have no idea. I answer with a noncommittal, "Okay." Not satisfying to anyone. People continue to be lovely, just taking their anger out on politics, it seems. I'm definitely angry, and I can't identify that, either. But watch out, because I can be pretty moody, and also downright mean. I delete the posts, but the sentiments float in the stratosphere. Maybe I even mean them, but I certainly don't mean them to be public ... or phrased so harshly ... or whatever.
I'm so tired. And I still haven't discovered why I'm writing this blog entry. Jonah wants me to tuck him in. I guess I'll give this a rest for tonight. And me.
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