I've felt sick much of today. Is it chemo? Am I coming down with something? How can I tell the difference? I woke up with a headache, and then nausea set in. I can't taste food again ... terrific. Complaint warning: I'm so tired of feeling sick and tired. That sounds familiar, I might've said it before or used it as a facebook status update. Or maybe I just think it all the time. I refuse to take a nausea pill on day 18 out of chemo. I have no reference for this. I'm guessing it's unrelated to chemo, but of course anything that happens ends up related to chemo. Any little cut on my hand that ends up red and inflamed, chemo. Any other sort of infection, chemo. Do I sound weary and annoyed?
Last night was Allison's band concert. She was at her friend Simona's, and 30 minutes before she had to be at school I called and asked if she wanted to go. Duh. I raced out of the house to get her, then stopped at the market, then ran into the house for just a second before driving her to school. Unfortunately, I didn't realize I was headed to the school when I initially went to get her, so I ended up at Harrington wearing a hat. Just a hat. I hate when that happens. Ken brought me a buff when he came (as requested, I didn't want him wandering around holding my wig), but I still wished I had my wig. I've developed my own little rules for what needs to be on my head and when, and to sit in the Harrington auditorium, that's a definite wig occasion. Subbing: wig. Market: any sort of head covering. A walk: a hat. I don't know, maybe it's silly, but it's how I've adapted. After the concert, a woman approached and said she used to wear her hair like mine. I was so confused for a moment, before realizing she is a cancer survivor. It turns out she is also the other trombonist's mom, so we ended up chatting for awhile. It made me feel a lot better about being there without my wig. I wouldn't have gotten into that conversation if I'd been wearing it. If you've had cancer, feel free to approach me in a store and start talking! Apparently I find it soothing. I guess it's just because you're still standing there, alive. Not that I spend all my time worrying about death these days. I don't. Honestly. The thought creeps in occasionally, but I think everyone has that thought now and then. My death fears are just more specific. I do fear ever having to go through chemo again. I'll do anything to avoid that (even eat shiitake mushrooms).
Allison had no idea her friend's mom had been through this. I hope she'll talk to him about it sometime. Also, I should add that my daughter plays a mean trombone. She's quite a musician. You should hear her piano playing. You probably won't (she's shy about it), but you should!
Jason was sitting here when I started this post, and he wants me to mention that it's really funny to do The Barber of Seville on my head.
Thursday, May 28, 2009
Tuesday, May 26, 2009
Well ...
It's finally starting to hit me that I'm done chemo. Huh, that deserves more emphasis:
WOO HOO!!!!! I'M DONE CHEMO!!!!!
Still not enough, but I don't have the linguistic skills to describe it any better than that. Once the really bad days pass I can't quite remember how they feel. I just know there was exhaustion, and an irritation about feeling hungry but being able to tolerate nothing. Now I don't need to worry about it.
I owe some people thank you notes, some for a long time now. I have been so out of whack, half of those notes are actually written and are somewhere under my bed now. I apologize, and I want you to know it's my own damn fault you haven't gotten them, and I do sincerely, incredibly appreciate everything everyone's done. It's going to take me forever to get my life back on track. My house ... oh, my poor neglected house.
This week is better than last week as far as extra crises, thank goodness. I have my new computer, and I think everything else will work out okay. Libby and Charlie were here for the weekend, and that's always nice. The weather was amazing (which made me miss the pool), so we had a great Sterbakov family barbecue on Sunday night. It's always fun to have the uncles around, and it's even better now that my mom joins us. And thanks to Libby, I didn't lift a finger.
I read about radiation, and now I'm kind of dreading it. I don't even want the tattoos. I didn't know it would make me tired. I didn't know it could damage my ribs. Ugh! Enough. Also, now I'm worried about the BRCA test. During the barbecue, my dad mentioned that colon cancer runs in his family. Uhhh ... gene! I never knew there was so much incidence of it there. I thought it was a weird fluke that I got cancer, and I even blamed Ben's mom's side of the family for his cancer. It couldn't have anything to do with the Sterbakovs, I've always thought. Colon cancer incidence is definitely raised with the gene. Women with the gene have a 60-80% chance of ending up with breast cancer, and a higher than normal risk of ovarian cancer. Colon cancer is right behind that. For men with the gene, the big risk is prostate cancer, followed by colon cancer. The gene is passed directly from parent to child. If my dad has the gene, Jill, Lori and I each have a 50% chance of having it. If I have the gene, one of my parents has it. I'd guess my dad, if I had to make a guess now. I still have to schedule an appointment to get my results.
Fun things coming up: tomorrow night, Allison's band concert (7 pm at Harrington), and Thursday afternoon, Jonah's kindergarten music concert (1:45 pm at Larchmont). I think Jason's band concert is June 4, but I haven't received anything about it.
WOO HOO!!!!! I'M DONE CHEMO!!!!!
Still not enough, but I don't have the linguistic skills to describe it any better than that. Once the really bad days pass I can't quite remember how they feel. I just know there was exhaustion, and an irritation about feeling hungry but being able to tolerate nothing. Now I don't need to worry about it.
I owe some people thank you notes, some for a long time now. I have been so out of whack, half of those notes are actually written and are somewhere under my bed now. I apologize, and I want you to know it's my own damn fault you haven't gotten them, and I do sincerely, incredibly appreciate everything everyone's done. It's going to take me forever to get my life back on track. My house ... oh, my poor neglected house.
This week is better than last week as far as extra crises, thank goodness. I have my new computer, and I think everything else will work out okay. Libby and Charlie were here for the weekend, and that's always nice. The weather was amazing (which made me miss the pool), so we had a great Sterbakov family barbecue on Sunday night. It's always fun to have the uncles around, and it's even better now that my mom joins us. And thanks to Libby, I didn't lift a finger.
I read about radiation, and now I'm kind of dreading it. I don't even want the tattoos. I didn't know it would make me tired. I didn't know it could damage my ribs. Ugh! Enough. Also, now I'm worried about the BRCA test. During the barbecue, my dad mentioned that colon cancer runs in his family. Uhhh ... gene! I never knew there was so much incidence of it there. I thought it was a weird fluke that I got cancer, and I even blamed Ben's mom's side of the family for his cancer. It couldn't have anything to do with the Sterbakovs, I've always thought. Colon cancer incidence is definitely raised with the gene. Women with the gene have a 60-80% chance of ending up with breast cancer, and a higher than normal risk of ovarian cancer. Colon cancer is right behind that. For men with the gene, the big risk is prostate cancer, followed by colon cancer. The gene is passed directly from parent to child. If my dad has the gene, Jill, Lori and I each have a 50% chance of having it. If I have the gene, one of my parents has it. I'd guess my dad, if I had to make a guess now. I still have to schedule an appointment to get my results.
Fun things coming up: tomorrow night, Allison's band concert (7 pm at Harrington), and Thursday afternoon, Jonah's kindergarten music concert (1:45 pm at Larchmont). I think Jason's band concert is June 4, but I haven't received anything about it.
Saturday, May 23, 2009
What a week!
Whew, I can't even believe it's already Saturday again. Usually as the days pass I focus on how I'm feeling from the chemo, but I haven't had time to focus on that or much of anything. Or maybe I've had to focus on everything.
Last Saturday we got the letter from the JCC about Jonah's camp scholarship. They barely gave him one, and I had a fit, cried, put it on my facebook status update. You cannot believe the kind and informative offers of help that followed that! By Wednesday, we received a revised letter, offering Jonah the exact scholarship we originally requested. Jonah is going! The camp is absolutely amazing. He will have the best summer, and never have to go to radiation with me. That was my good news.
During the week I had another run-in with Jason's principal. He's a nice guy, really, but he's like a member of the renaissance cult and doesn't get how it can hurt kids. I give up trying. One more month.
Something else happened during the week that actually trumps cancer. I'm not talking about it. We're dealing with it, and I think/hope in the long run it will be better than okay.
Some school districts have finally posted jobs. That, and I subbed in the school where I worked in the fall and had a nice chat with the principal. He seems confident that I will get a job for fall. I feel cautiously optimistic. I spent quite a bit of time in the past three days working on cover letters and so forth. I'm never sure how to write those. Sometimes I want to say everything, and I end up needing to change font size to keep the letters to one page! Then I get smart and cut instead. So yesterday I worked on cover letters for about two hours, left them up on my screen, and then Ken sat on my computer. UGH! I could print the cover letters and my resume, but now I don't have Internet access on there, so I can't submit the online stuff. I'll have to get a new computer this morning. My dad and Libby are here, so Charlie already went to Best Buy with me last night.
Anyway, where we stand is ... almost two weeks out! This is what I longed for, the day when I would feel better and not have to go backward a week later. It's been a very slow recovery from this treatment. My tongue is still about half numb. I'm still sleeping weird. Otherwise, I feel and look like me. I'm me. I'm not basically comatose. And I'm going to be okay. Okay. Great! I'll be making lots of changes to keep it that way, removing toxins from my life, etc. I guess I won't be quite the same person I was before, but I see that as a huge positive. I hope you will, too, or that at least you'll understand.
Okay, my kids' computer stinks.
Last Saturday we got the letter from the JCC about Jonah's camp scholarship. They barely gave him one, and I had a fit, cried, put it on my facebook status update. You cannot believe the kind and informative offers of help that followed that! By Wednesday, we received a revised letter, offering Jonah the exact scholarship we originally requested. Jonah is going! The camp is absolutely amazing. He will have the best summer, and never have to go to radiation with me. That was my good news.
During the week I had another run-in with Jason's principal. He's a nice guy, really, but he's like a member of the renaissance cult and doesn't get how it can hurt kids. I give up trying. One more month.
Something else happened during the week that actually trumps cancer. I'm not talking about it. We're dealing with it, and I think/hope in the long run it will be better than okay.
Some school districts have finally posted jobs. That, and I subbed in the school where I worked in the fall and had a nice chat with the principal. He seems confident that I will get a job for fall. I feel cautiously optimistic. I spent quite a bit of time in the past three days working on cover letters and so forth. I'm never sure how to write those. Sometimes I want to say everything, and I end up needing to change font size to keep the letters to one page! Then I get smart and cut instead. So yesterday I worked on cover letters for about two hours, left them up on my screen, and then Ken sat on my computer. UGH! I could print the cover letters and my resume, but now I don't have Internet access on there, so I can't submit the online stuff. I'll have to get a new computer this morning. My dad and Libby are here, so Charlie already went to Best Buy with me last night.
Anyway, where we stand is ... almost two weeks out! This is what I longed for, the day when I would feel better and not have to go backward a week later. It's been a very slow recovery from this treatment. My tongue is still about half numb. I'm still sleeping weird. Otherwise, I feel and look like me. I'm me. I'm not basically comatose. And I'm going to be okay. Okay. Great! I'll be making lots of changes to keep it that way, removing toxins from my life, etc. I guess I won't be quite the same person I was before, but I see that as a huge positive. I hope you will, too, or that at least you'll understand.
Okay, my kids' computer stinks.
Friday, May 15, 2009
Amazing
It's amazing how perception can change so quickly. This afternoon I realized I WILL start growing hair again soon, and therefore I will actually have hair, and have to care for it. The thought made me weepy with joy, as I imagined having enough to pull through my big round brush, and to tuck behind my ears. It's only been two months since the day I cut and bagged it, and already it's hard to imagine it was ever there, like it was some long past dream. I know I'm in a transition now, and though it's obviously a good one, it's a slow-going adjustment for my state of mind.
The last three days have been hell, but I'm coming out of it now. I ate a whole dinner, and I've been awake since about noon. I'm still having significant body temperature problems (feet are ice cold, head and neck perpetually sweating), but I am getting relief from the cold wash cloth on the top of my head. I look ridiculous, which is saying something, but I'm just sitting upstairs in my room.
Anyway, it's not yet time to sum up anything. I still have more of the same freaky side effects to endure. Most of my tastebuds will return in a week or so, and then I'll have to consider my diet very carefully (between my nutritionist friend and the fact that I gained five pounds, there's much to consider). And then maybe I'll have some idea of how I feel. Right now it's all raw emotion, not making much sense.
A shout out to my boys, Jason and Jonah. Jason sits with me and tells me stories, and rubs my back. Just when it seems completely unbearable, he helps me bear it. Jonah brings me card after card with cut-out hearts and sentiments like "i hop you fill beter," and then plays a personalized rendition of "You Are My Sunshine" on his one-string guitar. You have to see the earnest emotion in Jonah's eyes, because there's no describing it. Two good boys!
The last three days have been hell, but I'm coming out of it now. I ate a whole dinner, and I've been awake since about noon. I'm still having significant body temperature problems (feet are ice cold, head and neck perpetually sweating), but I am getting relief from the cold wash cloth on the top of my head. I look ridiculous, which is saying something, but I'm just sitting upstairs in my room.
Anyway, it's not yet time to sum up anything. I still have more of the same freaky side effects to endure. Most of my tastebuds will return in a week or so, and then I'll have to consider my diet very carefully (between my nutritionist friend and the fact that I gained five pounds, there's much to consider). And then maybe I'll have some idea of how I feel. Right now it's all raw emotion, not making much sense.
A shout out to my boys, Jason and Jonah. Jason sits with me and tells me stories, and rubs my back. Just when it seems completely unbearable, he helps me bear it. Jonah brings me card after card with cut-out hearts and sentiments like "i hop you fill beter," and then plays a personalized rendition of "You Are My Sunshine" on his one-string guitar. You have to see the earnest emotion in Jonah's eyes, because there's no describing it. Two good boys!
Tuesday, May 12, 2009
Gosh, sorry!
I have been thinking I should get over here, but life gets so busy at this time of year! I can write about some of it:
Last week my big kids were in the Spring STEP Show. As far as middle school shows go, I don't see how anyone could beat what Jack and Christine Jeckot and company do with and for these kids. I try to volunteer as much as I can, but I normally end up just helping out during show week. Same with this year. I worked backstage when the 6th graders bussed over to see the show last Wednesday morning, and Thursday morning I held a door shut for two hours (ouch).
Jason had a fairly big lead in the show. Allison spent four months downplaying her part, but it was a terrific part (also a lead) and she made it even better. Knowing all this, my in-laws came up from Florida to watch, and Lori and Dave settled in South Jersey for a few days, starting with the show. I get so excited about the shows, I saw all four performances. Usually the auditorium is freezing, but of course now that I dress warm and have hot flashes, the air didn't work. So I did end up stuffing the wig in my purse and going with a buff for the second half of one show. Allison wasn't thrilled, but she didn't say a word. And poor Civia, who was trying to help me figure out what to do with it other than sticking it in my purse. For awhile the wig was hanging backstage on a paper towel roll with the Kiss costume wigs that were going to be used later in the show. But as expensive as my wig was (thanks as usual, Charlie and Libby), I couldn't take my mind off the idea that it could end up on teenage heads while they were wearing Kiss makeup! So that didn't last long. It was fine in my purse.
On Friday we just hung with family, but Saturday was the Mt. Laurel Baseball day at the Phillies game. Hot, but fun! I love seeing all the kids marching around the field. Last year I marched with them, so it was Ken's turn this year. We all went, 11 of us.
And Sunday, Mother's Day, was the Komen Walk. I'll attach a couple pictures (including one of me bald, thanks to the wind). It wasn't quite how I expected it, with lots of pink shirt camaradie and getting to know new people, but I was happy to have so many of my regular people, whom I already love, with me. And other than the wind, the weather was great! And thanks so much, Jill, for hosting that great brunch after the Walk. It was special to have Civia and her mom, and my in-laws, over for that.
So yesterday was my LAST TREATMENT! I didn't even feel the IV going in, it was the best one of all. Woohooo! I ran around all morning so I didn't get my pre-treatment good-tasting meal, but Barb (who took me to Penn) and I went out for dinner afterward. Weird, the beginning of my burrito tasted better than the end. I lose my taste buds that quickly now, I guess. Later, Barb, MJ, and I went for a nighttime walk (after I tried again to work out payment arrangements with Penn).
So far today I've had 2.2 bottles of water, and I've vacuumed, and I've emailed two teachers, and finished the last of the laundry (ungodly amount of laundry). I've taken Claritin (supposed to stave off bone pain that could be caused by the neulasta) and my last morning steroids. I have to take Zofran next (with breakfast, still waiting for Jonah to wake up), and a little later I'll take the Emend (the good nausea stuff). While Jonah's in school this afternoon I have to return stuff, and then tonight will be crazy: I have to take Jonah, in baseball gear, with me to Penn by 4:30. Get my neulasta shot and head back, so I can pick up the Hebrew school boys. Drop off Jonah at t-ball (the other parents agreed to keep an eye on him for me), then take the Hebrew boys to synagogue, then get back to the game. Then back to the hebrew school. Crazy! I'll definitely be ready to sleep all day tomorrow. And the returns are all at Centerton Square, so I should still end up with time for a nap this afternoon.
Anyway, even knowing what's coming over the next few days, I just feel so good, so thrilled. It's just a few more days! I can't believe the two months went that fast. Four treatments never seemed all that hard to handle until I had the first one. Then for awhile it seemed insurmountable. I'm so blessed to have found a medical staff that cares so much about not only my health, but my comfort. Everything I've needed has immediately ended up at my disposal.
After talking to Dr. Fox yesterday, I'm leaning toward having radiation at Penn. So I'll meet with the radiation oncologist there as soon as they call to give me the appointment. Fox said they'll give me parking passes, so that's what makes the difference. I do feel so comfortable at Penn, anyway. Oh, and I did not have my gene test yesterday, they screwed up. So I have to go back Monday afternoon for that, and they'll pay for that parking, too, since it was their mistake. Parking down there is at least $6 a visit, so it adds up quickly! Bad enough that the toll is $4 each trip.
I won't see Dr. Fox for four months.
Love you all!
Last week my big kids were in the Spring STEP Show. As far as middle school shows go, I don't see how anyone could beat what Jack and Christine Jeckot and company do with and for these kids. I try to volunteer as much as I can, but I normally end up just helping out during show week. Same with this year. I worked backstage when the 6th graders bussed over to see the show last Wednesday morning, and Thursday morning I held a door shut for two hours (ouch).
Jason had a fairly big lead in the show. Allison spent four months downplaying her part, but it was a terrific part (also a lead) and she made it even better. Knowing all this, my in-laws came up from Florida to watch, and Lori and Dave settled in South Jersey for a few days, starting with the show. I get so excited about the shows, I saw all four performances. Usually the auditorium is freezing, but of course now that I dress warm and have hot flashes, the air didn't work. So I did end up stuffing the wig in my purse and going with a buff for the second half of one show. Allison wasn't thrilled, but she didn't say a word. And poor Civia, who was trying to help me figure out what to do with it other than sticking it in my purse. For awhile the wig was hanging backstage on a paper towel roll with the Kiss costume wigs that were going to be used later in the show. But as expensive as my wig was (thanks as usual, Charlie and Libby), I couldn't take my mind off the idea that it could end up on teenage heads while they were wearing Kiss makeup! So that didn't last long. It was fine in my purse.
On Friday we just hung with family, but Saturday was the Mt. Laurel Baseball day at the Phillies game. Hot, but fun! I love seeing all the kids marching around the field. Last year I marched with them, so it was Ken's turn this year. We all went, 11 of us.
And Sunday, Mother's Day, was the Komen Walk. I'll attach a couple pictures (including one of me bald, thanks to the wind). It wasn't quite how I expected it, with lots of pink shirt camaradie and getting to know new people, but I was happy to have so many of my regular people, whom I already love, with me. And other than the wind, the weather was great! And thanks so much, Jill, for hosting that great brunch after the Walk. It was special to have Civia and her mom, and my in-laws, over for that.
So yesterday was my LAST TREATMENT! I didn't even feel the IV going in, it was the best one of all. Woohooo! I ran around all morning so I didn't get my pre-treatment good-tasting meal, but Barb (who took me to Penn) and I went out for dinner afterward. Weird, the beginning of my burrito tasted better than the end. I lose my taste buds that quickly now, I guess. Later, Barb, MJ, and I went for a nighttime walk (after I tried again to work out payment arrangements with Penn).
So far today I've had 2.2 bottles of water, and I've vacuumed, and I've emailed two teachers, and finished the last of the laundry (ungodly amount of laundry). I've taken Claritin (supposed to stave off bone pain that could be caused by the neulasta) and my last morning steroids. I have to take Zofran next (with breakfast, still waiting for Jonah to wake up), and a little later I'll take the Emend (the good nausea stuff). While Jonah's in school this afternoon I have to return stuff, and then tonight will be crazy: I have to take Jonah, in baseball gear, with me to Penn by 4:30. Get my neulasta shot and head back, so I can pick up the Hebrew school boys. Drop off Jonah at t-ball (the other parents agreed to keep an eye on him for me), then take the Hebrew boys to synagogue, then get back to the game. Then back to the hebrew school. Crazy! I'll definitely be ready to sleep all day tomorrow. And the returns are all at Centerton Square, so I should still end up with time for a nap this afternoon.
Anyway, even knowing what's coming over the next few days, I just feel so good, so thrilled. It's just a few more days! I can't believe the two months went that fast. Four treatments never seemed all that hard to handle until I had the first one. Then for awhile it seemed insurmountable. I'm so blessed to have found a medical staff that cares so much about not only my health, but my comfort. Everything I've needed has immediately ended up at my disposal.
After talking to Dr. Fox yesterday, I'm leaning toward having radiation at Penn. So I'll meet with the radiation oncologist there as soon as they call to give me the appointment. Fox said they'll give me parking passes, so that's what makes the difference. I do feel so comfortable at Penn, anyway. Oh, and I did not have my gene test yesterday, they screwed up. So I have to go back Monday afternoon for that, and they'll pay for that parking, too, since it was their mistake. Parking down there is at least $6 a visit, so it adds up quickly! Bad enough that the toll is $4 each trip.
I won't see Dr. Fox for four months.
Love you all!
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