I'm guessing calling it an uplifting oncological appointment qualifies as an oxymoron, anyway.
All morning I was a nervous wreck. I'm starting to realize that if I'm a wreck, I'm psyching myself well. It's when I get caught off guard that I end up hugging the Xanax bottle and my favorite blankie. I actually left early for my appointment, picked up my mom and then ... went the WRONG WAY to Ken's office. This might not seem so bad, but Ken works at the Philly Airport, pretty much. How do you miss that exit from I-95? I'd never done it before. It turns out that if you miss that exit, you have to go down a few miles and then figure out which direction on 420 has a better shot of working as a u-turn (it's south, I learned after the fact). And of course, if you go the wrong way, and you're going to the oncologist and you are now worried about the time and you still have to pick up your husband, you have to scream at him on the phone about being lost and then hang up and need to grovel later. 'Member the "occasional saint" part of our deal? That's it. So Ken, yes, I'm sorry I screamed and hung up. Sheesh. Maybe when I'm done with breast cancer I'll keep this blog to write about stupid driving things.
We ended up barely making it on time. Dr. Fox took us back pretty quickly, and he wrote out the history of chemotherapy for us, including dates of introduction of new meds. What's even more impressive is that he wrote legibly ... upside down! He then asked me questions about my wishes. He asked if I wanted the oncotype test, or if I wanted the chemo either way. I was so surprised to have the choice! I said I think I should just have the chemo, and he thought that was the wiser decision, at my age and with my diagnosis. He then laid out my treatment: 4 rounds of TC (taxotere and cytoxan)! But, I interrupted, Dr. Czerniecki said 8 rounds, with TC and AC. Dr. Fox replied, "He's a surgeon. He doesn't know this stuff." TC is the easier type of chemo to handle, but of course I'll still have some of the following side effects, which Dr. Fox wrote upside down: Nausea, menopause (20% chance), hair loss (definite), exhaustion (definite), perhaps mouth pain and metallic taste. My only limitations are no dental visits. I can exercise moderately, I can drink wine at book club meetings, etc. Best of all, my LAST treatment will be right around Mother's Day. I will need radiation after that, and then the 5 years of tamoxifen, and then I'll be done!
Well, except for the BRCA gene test. I have to fill out all kinds of paperwork just to qualify for it (Dr. Fox says I definitely will), and then eventually I can have the test. I hope I can get it soon, because if I'm getting rid of my ovaries I want it done before September.
I'm feeling really good now. I'm at about 80%, I'd say. Dr. Fox looked at the surgical sites and asked if Wu had cleared me to start chemo. I guess I look that healed! I stand completely straight now, I gained 5 pounds (Fox says my weight is fine), and I run errands almost like normal. The only problem is that the burning in my chest, which Wu said was because of the feeling returning, has been replaced by the pain of the feeling now that it's returned. And I'm still often itchy.
Now I've got to run and get Jonah from AJ's. Thanks, Amy, for getting him from school and taking care of him today!
Thursday, February 19, 2009
Friday, February 13, 2009
50 Percent (not a prognosis)
On Wednesday I realized two things: One, I'm halfway to the six-week mark, and two, I feel about 50 percent recovered. On track!
I went to Dr. Wu's office for a checkup on Monday, and she's happy with how I'm healing. She said she wants to see me on March 2, and then she'll clear me to start chemo. So I wait longer. But the visit turned out really well, because I exchanged contact information with Barbara! I first saw Barbara when I went for my pre-op admissions testing, and my mother's obnoxious "I Love Lucy" ring tone coming from somwhere within her 10-pound purse made me laugh. I noticed Barbara across the room laughing, too, and we made eye contact. When I got out my last drain, there was Barbara at Dr. Wu's office. We chatted for a minute, and I found out she'd had the exact same surgery I'd had, two days later. On Monday I hoped I'd run into her, and she was there! Yesterday we talked on the phone for an hour. She's already through with chemo and radiation, with the same oncologist, and she told me everything about her experiences. It was so enlightening. She said they keep all sorts of DVDs in the treatment rooms, and nurses come in periodically with sodas and snacks. They try. I'm hoping for Wi-fi, of course, but because of the move to Perelman, she's not sure about that. I'll find out!
I still don't have a treatment plan. I was supposed to see Dr. Fox on Monday, but because they didn't allot enough time, my appointment is now on Thursday afternoon. I'll get my whole plan that day. I'll be relieved to know, definitely. I'll have a timeframe, and I'll know exactly what drugs I'm getting. Czerniecki said I probably don't need a port, but after the IV problems I've had recently, I'm pretty sure I want one. That might be a discussion. Also, I have to find out about the test for the BRCA gene. If I have that, the ovaries will be the next to go. I'm just so anxious to find out exactly when I'll be FINISHED with all of this!
Once again, thank you for reading. It's so nice that I don't have to actually say all of this!
I went to Dr. Wu's office for a checkup on Monday, and she's happy with how I'm healing. She said she wants to see me on March 2, and then she'll clear me to start chemo. So I wait longer. But the visit turned out really well, because I exchanged contact information with Barbara! I first saw Barbara when I went for my pre-op admissions testing, and my mother's obnoxious "I Love Lucy" ring tone coming from somwhere within her 10-pound purse made me laugh. I noticed Barbara across the room laughing, too, and we made eye contact. When I got out my last drain, there was Barbara at Dr. Wu's office. We chatted for a minute, and I found out she'd had the exact same surgery I'd had, two days later. On Monday I hoped I'd run into her, and she was there! Yesterday we talked on the phone for an hour. She's already through with chemo and radiation, with the same oncologist, and she told me everything about her experiences. It was so enlightening. She said they keep all sorts of DVDs in the treatment rooms, and nurses come in periodically with sodas and snacks. They try. I'm hoping for Wi-fi, of course, but because of the move to Perelman, she's not sure about that. I'll find out!
I still don't have a treatment plan. I was supposed to see Dr. Fox on Monday, but because they didn't allot enough time, my appointment is now on Thursday afternoon. I'll get my whole plan that day. I'll be relieved to know, definitely. I'll have a timeframe, and I'll know exactly what drugs I'm getting. Czerniecki said I probably don't need a port, but after the IV problems I've had recently, I'm pretty sure I want one. That might be a discussion. Also, I have to find out about the test for the BRCA gene. If I have that, the ovaries will be the next to go. I'm just so anxious to find out exactly when I'll be FINISHED with all of this!
Once again, thank you for reading. It's so nice that I don't have to actually say all of this!
Sunday, February 8, 2009
Busy Day
Starting to plan Jason's bar mitzvah! This morning I put on my favorite jeans, another first, and went to the synagogue for the party fair. The jeans are big on me. I have lost 10 pounds since the night before the surgery, and I can't imagine my old breasts weighed more than a couple of those pounds. So I'm too skinny, and I'm trying to figure out what to do about it. Thanks, MJ, for bringing me cookies and chocolate just at the exact right time! Anyway, the party fair was productive, and I walked around there the whole time. Felt like crap at the end, though, so I used a scooter at ShopRite. I think I'll miss using the scooter, but I love having my body (especially lungs) in working order again.
Yesterday I walked around the block. Once with Ken and the dogs, and once with my friend Bonnie, who came down from New York during tax season (she's an accountant) to see me. So yes, that's TWICE around the block!
Yesterday I walked around the block. Once with Ken and the dogs, and once with my friend Bonnie, who came down from New York during tax season (she's an accountant) to see me. So yes, that's TWICE around the block!
Thursday, February 5, 2009
Much calmer
Okay, I read my copy of Susan Love's Breast Book this morning, and I feel better. Because of my anxiety, I don't know as much about breast cancer as I probably should. I'm "not allowed" to look at anything about it on the Internet, and I've learned from experience that this is wise for me.
Yesterday, what Czerniecki said was that he didn't think I'd still be classified as T2. I thought this meant I'm now Stage 3. But according to my book, node negative cancers are not ever classified as Stage 3. The only thing that changes is that I am now borderline Stage 2A and Stage 2B (this is supposed to be Roman numerals, but I don't care). He was measuring the total amount of cancer while I was in his office, and that's why he was reading and talking slowly. The total area is more than 5 cm., which makes it T3, but he says because it's kind of scattered, that's misleading. So I'll consider myself borderline, just to make myself happy. So there!
Here is what the Breast Book showed me: Stage 2A: tumor between 0-2cm. with node involvement, or tumor between 2-5cm. without node involvement; Stage 2B: tumor 2-5cm. with node involvement, or tumor more than 5cm. without node involvement. So I would have been Stage 2A if only the cancer area was a bit smaller.
I also forgot to mention a couple things yesterday: first, I won't see Czerniecki again for a year. He's going to do my breast exams from now on. I'll never have a mammogram again. Second, I have two more upcoming appointments. I have a follow-up with Dr. Wu on Monday. How can I thank her? Even Czerniecki was remarking about how perfect my breasts look. And my big appointment with Dr. Fox (the oncologist) is on the 16th.
I have no idea who's reading the blog these days. I see the followers, and I check obsessively for comments. Ken mentioned my neighbor across the street is reading it! I miss my neighbors during the winter when I never see them, so if you're reading this and I don't generally hear from you, say hi! Like I said the first day, it's impossible to say the wrong thing to me, unless you cry about my impending death or something that would freak me out. I also think Terry and Terri are reading, and they're both survivors. One is a very recent survivor, diagnosed just before I was, and I wish them both all the best. Gloria is a 20-year ovarian cancer survivor, and she is reading this blog as well. I think Sharon has read a bit, and I remember her telling me all about her experiences, when I stayed with her in 1991. At that time she was a 2 or 3-year survivor of Stage 4 breast cancer! Although this blog is really to keep everyone updated, maybe someday it will help someone who gets this diagnosis? That would be nice.
Last night I was surprised to see how many people don't even know about this mess! I went to the high school for the parent orientation. Can you believe I'll have a kid in high school? Well, if you've seen Allison lately, you can believe it. Anyway, I felt pretty normal sitting there, and then I walked all the way to the new cafeteria. It's obvious I'm not walking correctly yet, but that's okay. I made it, and it was farther than I'd walked. In the cafeteria I sat with the Incredible Barb, and with Mary T. Our girls all started kindergarten together in the same class, and here we are. It's nice to have this continuity. I love where I live.
Yesterday, what Czerniecki said was that he didn't think I'd still be classified as T2. I thought this meant I'm now Stage 3. But according to my book, node negative cancers are not ever classified as Stage 3. The only thing that changes is that I am now borderline Stage 2A and Stage 2B (this is supposed to be Roman numerals, but I don't care). He was measuring the total amount of cancer while I was in his office, and that's why he was reading and talking slowly. The total area is more than 5 cm., which makes it T3, but he says because it's kind of scattered, that's misleading. So I'll consider myself borderline, just to make myself happy. So there!
Here is what the Breast Book showed me: Stage 2A: tumor between 0-2cm. with node involvement, or tumor between 2-5cm. without node involvement; Stage 2B: tumor 2-5cm. with node involvement, or tumor more than 5cm. without node involvement. So I would have been Stage 2A if only the cancer area was a bit smaller.
I also forgot to mention a couple things yesterday: first, I won't see Czerniecki again for a year. He's going to do my breast exams from now on. I'll never have a mammogram again. Second, I have two more upcoming appointments. I have a follow-up with Dr. Wu on Monday. How can I thank her? Even Czerniecki was remarking about how perfect my breasts look. And my big appointment with Dr. Fox (the oncologist) is on the 16th.
I have no idea who's reading the blog these days. I see the followers, and I check obsessively for comments. Ken mentioned my neighbor across the street is reading it! I miss my neighbors during the winter when I never see them, so if you're reading this and I don't generally hear from you, say hi! Like I said the first day, it's impossible to say the wrong thing to me, unless you cry about my impending death or something that would freak me out. I also think Terry and Terri are reading, and they're both survivors. One is a very recent survivor, diagnosed just before I was, and I wish them both all the best. Gloria is a 20-year ovarian cancer survivor, and she is reading this blog as well. I think Sharon has read a bit, and I remember her telling me all about her experiences, when I stayed with her in 1991. At that time she was a 2 or 3-year survivor of Stage 4 breast cancer! Although this blog is really to keep everyone updated, maybe someday it will help someone who gets this diagnosis? That would be nice.
Last night I was surprised to see how many people don't even know about this mess! I went to the high school for the parent orientation. Can you believe I'll have a kid in high school? Well, if you've seen Allison lately, you can believe it. Anyway, I felt pretty normal sitting there, and then I walked all the way to the new cafeteria. It's obvious I'm not walking correctly yet, but that's okay. I made it, and it was farther than I'd walked. In the cafeteria I sat with the Incredible Barb, and with Mary T. Our girls all started kindergarten together in the same class, and here we are. It's nice to have this continuity. I love where I live.
Wednesday, February 4, 2009
Add expletive here
Well, I ventured out in the snow to go see Dr. Czerniecki this morning. Libby stayed home and got the kids off after their 2-hour delays, and Civia's mom watched her kids so she could drive me to the hospital. Something is wrong with my van door. Fun start to the morning. Civia said it made her feel optimistic.
Even though we arrived 45 minutes late (as advised) for the appointment, we still waited and waited. Nancy the NP came to warm up the crowd (me and Civia) by telling us it is now all out of me, and the margins were clear. So when Czerniecki came in, we were feeling good and happy. Well, except that I was a nervous wreck.
He had the full path reports, and told me right away he'd found another 3 cm of cancer in the breast. Very bad, but he didn't necessarily say that. He was reading and reading as he was talking slowly, so his story changed a bit as he spoke. I'm now restaged, Stage 3, which scared the hell out of me. But Czerniecki says they have to do it this way, even though as far as he could tell it wasn't one giant mass, but little specks around one bigger mass. He insists it doesn't change much and my prognosis is still very good.
However: he didn't know I'd gotten myself all optimistic thinking I might not even need chemo, so when he said not much changes, and I'll still need 8 rounds of chemo plus radiation, to me that means a big mental adjustment. One I haven't really made yet, so don't call me unless you want to listen to me bawl. I'm going to try to nap as soon as I finish this. I was gone all day (Civia and I went out to lunch with Ken), and I AM going to Lenape tonight for the incoming freshmen parents' spiel. Even though my stomach is upset and I'm miserable.
I'll try to hang onto Czerniecki's positive air, because he hasn't always had that with me. He thinks my prognosis is very good, and that by early summer I'll be done with everything, growing back my own hair and feeling great. Today, that seems so incredibly far away from now. And that's the end of this update.
Even though we arrived 45 minutes late (as advised) for the appointment, we still waited and waited. Nancy the NP came to warm up the crowd (me and Civia) by telling us it is now all out of me, and the margins were clear. So when Czerniecki came in, we were feeling good and happy. Well, except that I was a nervous wreck.
He had the full path reports, and told me right away he'd found another 3 cm of cancer in the breast. Very bad, but he didn't necessarily say that. He was reading and reading as he was talking slowly, so his story changed a bit as he spoke. I'm now restaged, Stage 3, which scared the hell out of me. But Czerniecki says they have to do it this way, even though as far as he could tell it wasn't one giant mass, but little specks around one bigger mass. He insists it doesn't change much and my prognosis is still very good.
However: he didn't know I'd gotten myself all optimistic thinking I might not even need chemo, so when he said not much changes, and I'll still need 8 rounds of chemo plus radiation, to me that means a big mental adjustment. One I haven't really made yet, so don't call me unless you want to listen to me bawl. I'm going to try to nap as soon as I finish this. I was gone all day (Civia and I went out to lunch with Ken), and I AM going to Lenape tonight for the incoming freshmen parents' spiel. Even though my stomach is upset and I'm miserable.
I'll try to hang onto Czerniecki's positive air, because he hasn't always had that with me. He thinks my prognosis is very good, and that by early summer I'll be done with everything, growing back my own hair and feeling great. Today, that seems so incredibly far away from now. And that's the end of this update.
Monday, February 2, 2009
Out and about
Things are looking up! Yesterday was a sunny, temperate day, and I sat outside on the front porch in my robe and pj bottoms and comfy Lambchop slippers. My friend Bonnie had brought football cookies and a kugel, and while we chatted our sons goofed around in the yard. Civia stopped by with a taco/cream cheese ball thing for which I need the recipe, and she chatted with us for a few minutes. The dogs got out, too, and apparently Molly decided to stop traffic on Union Mill Road before the boys could get her. For the record, I don't want the dogs out there. Ever. They have the whole fenced in backyard, and when I can walk them on leashes, I do. Anyway ... Libby came (from Florida to take care of me, so wonderful), my mom came, Jill came, and we all watched the fantastic Super Bowl together.
Today has been just as lovely. The visiting nurse checked me this morning, and she was happy to see me up and about. All my stats are fine, and she helped me fit into the new sports bra Ken bought me yesterday (he says I owe him big time for sending him bra shopping!). I was so empowered by the nurse's good news, I decided I wanted to go to Target with Libby. I put on workout clothes because they're stretchy and warm, and after getting everything together we headed out to the van ... which was dead! Someone who refuses to take responsibility left two lights on and killed the battery. I started to cry, and Libby was surprised. She said surely it's not the worst thing going on in my life. Kind of hard to explain, though. The big things, I have to tackle constantly. The little surprises and setbacks when I think I'm moving forward, that's what sometimes puts me over the edge. Here I was, all ready to do something important, and the stupid car (I love my car) wouldn't start. Libby took care of that so quickly, though. She had AAA here in 10 minutes, and we made it to Target about 30 minutes later. No charge for the jump start.
I tell you, I'm so glad for those scooters. I was so happy to be at Target! I ran into my friend Debbie and some other people, including one who doesn't even know what's going on (which was nice). She asked why I was in the scooter, and I said I had surgery. She didn't pry, she just helped Libby get me and our purchases into the car.
My next update will probably be Wednesday. I have an appointment with Czerniecki, and he'll have pathology results by then. I'm kind of nervous, as usual. Cross your fingers!
Today has been just as lovely. The visiting nurse checked me this morning, and she was happy to see me up and about. All my stats are fine, and she helped me fit into the new sports bra Ken bought me yesterday (he says I owe him big time for sending him bra shopping!). I was so empowered by the nurse's good news, I decided I wanted to go to Target with Libby. I put on workout clothes because they're stretchy and warm, and after getting everything together we headed out to the van ... which was dead! Someone who refuses to take responsibility left two lights on and killed the battery. I started to cry, and Libby was surprised. She said surely it's not the worst thing going on in my life. Kind of hard to explain, though. The big things, I have to tackle constantly. The little surprises and setbacks when I think I'm moving forward, that's what sometimes puts me over the edge. Here I was, all ready to do something important, and the stupid car (I love my car) wouldn't start. Libby took care of that so quickly, though. She had AAA here in 10 minutes, and we made it to Target about 30 minutes later. No charge for the jump start.
I tell you, I'm so glad for those scooters. I was so happy to be at Target! I ran into my friend Debbie and some other people, including one who doesn't even know what's going on (which was nice). She asked why I was in the scooter, and I said I had surgery. She didn't pry, she just helped Libby get me and our purchases into the car.
My next update will probably be Wednesday. I have an appointment with Czerniecki, and he'll have pathology results by then. I'm kind of nervous, as usual. Cross your fingers!
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