So I decided that I don't want to wait until January to have my DIEP Flap surgery (the reconstruction). These expanders are just so uncomfortable (the rib pain is not getting any better), plus psychologically it would be good for me to finish everything this year, and start the new year fresh. I was hoping to do it at the end of November, or beginning of December, so it wouldn't be too close to Christmas...but the only available date was December 14th. I debated a bit...it's a 4 to 6 week recovery, and I don't want to mess up Christmas for the kids...but decided to go ahead and do it. I plan to get all my holiday shopping, wrapping, etc done before the surgery, and then enjoy the actual day from the comfort of the sofa.
Good news: I got the pancreas biopsy results back...it was benign. Whew, a big relief. The doctor recommends getting another MRI in a year, I guess just to monitor for any changes.
Radiation continues to be uneventful. I am getting a slightly red area on my upper chest, which looks like a mild sunburn. I'm putting aloe and lotion on many times a day, and hope that it won't get any worse.
I happened to be surfing around the National Cancer Institute website and found a "Breast Cancer Risk Assessment Tool" (http://www.cancer.gov/bcrisktool/). I thought, hmm, I wonder what my risk of getting breast cancer is, according to this tool? I answered the questions as I would have when I was 40 years old (three years ago, in case you don't know!)...and it estimated that I had a .5% chance of developing breast cancer in the next 5 years (the average 40-year-old has a .6% chance). Wow, how did I manage to be the 1 in 200? Who knows how useful that assessment tool is, really...but it just added to the "why me???" feeling I've had all this time.
Which reminds me, if you are a woman who is 40 or older, please go out and get a mammogram, and a clinical breast exam! The best protection is early detection! If you want to learn more about breast cancer, VA Hospital Center is hosting "Ladies for Life: a free breast cancer education event for women of all ages", Saturday, October 1, 9:00-11:00am.
Love you all,
Liz
Tuesday, September 13, 2011
Saturday, September 3, 2011
Radiation Begins
I have now had two radiation treatments. Turns out, even radiation oncologists take Labor Day off, so I have three days off, then back to going every week day. Now that everything is in place, the treatments are very quick...I show up at 1:30 and go straight to the changing rooms, get my own gowns and change, and then sit down in the lounge; I barely have time to open a magazine before they call me in; I get into position on the table, and have to pretty much lie there limp while they scooch me into just the right spot by pushing and pulling on the sheet underneath me (it's hard to resist the urge to help, but they don't want you to, you have to let them do it); they put a warm wet cloth over my breast area, called a bolus I think, to increase the radiation near the skin; then I lie there not moving while the machine does it's thing, for about 5 minutes--it rotates around zapping me from different angles--I don't feel anything. Then I'm back to the changing rooms...about a 20 minute visit in total.
The girls and Nathan made a paper chain for me, with 33 links. They wrote little messages on each link, and I get to tear one off after each radiation treatment. A great way to count them down, and a nice boost to read the sweet and funny messages. I am also slathering on lots of stuff, to try to prevent radiation burns to my skin; my mom took me to Sandra Cope, a woman in Old Town that makes special lotions and has a reputation among breast cancer patients. She sold us two bottles of fresh cut aloe vera gel, as well as two kinds of creams. I soak a cloth in the aloe and apply it to my skin right after each treatment, then rub on the cream several times a day. I'm hoping it will do the trick. Thanks to Libby Garvey for telling us about Sandra!
The endoscopic ultrasound and biopsy last week was not a lot of fun. I'm not sure why it upset me so much, because I've been through worse...I think it was a combination of the fear that I've been keeping at the back of my mind all this time that it would turn out to be pancreatic cancer, and that having to be back in the hospital getting poked and prodded brought back unpleasant memories. Of course I didn't feel the procedure itself...they put me under. The worst thing to me was a plastic thing they stuck in my mouth, to open it and protect my teeth during the procedure...but they didn't warn me ahead of time, and suddenly stuck it in there...I couldn't swallow, and it felt like a gag was put on me. I like to know what's coming, and I wish they had explained it first, and told me that I would only be aware of it for mere seconds before going to sleep. Anyway, the good news is that the doctor told me right afterward that he didn't see any signs that the cyst is cancer, it still looks very benign to him; unfortunately, though, I have to wait 6 weeks for the pathology report to come back to be absolutely sure. I have heard 'it looks benign' before, so I won't fully relax until I get that report.
All is still good with the tamoxifen...the very slight nausea I was feeling is gone, and the hot flashes are minimal. I have added more supplements to my daily pile of pills...bee propolis and bee pollen (recommended by Sandra Cope), Quercetin (an anti-oxidant), Seratran (to 'repair, rebuild, and reactivate'), and most days I take probiotics. I am still juicing, and have a glass of fresh veggie juice first thing every morning. Physically, I feel pretty good in general--a normal energy level and a desire to get out and do things. Still experiencing a lot of rib pain on one side from the foob...but otherwise good.
It has been a very strange summer, all in all...I've been through a lot, but it has also been very nice being at home with the kids and just bumming around. I think we are all ready to get back into a normal routine, though...the routine of school for the girls, playgroup/music class/nap time for Griffin, and daily radiation for me. I hope there is a healthy, normal, uneventful fall in store for my family...and for all of you too.
Love you all,
Liz
The girls and Nathan made a paper chain for me, with 33 links. They wrote little messages on each link, and I get to tear one off after each radiation treatment. A great way to count them down, and a nice boost to read the sweet and funny messages. I am also slathering on lots of stuff, to try to prevent radiation burns to my skin; my mom took me to Sandra Cope, a woman in Old Town that makes special lotions and has a reputation among breast cancer patients. She sold us two bottles of fresh cut aloe vera gel, as well as two kinds of creams. I soak a cloth in the aloe and apply it to my skin right after each treatment, then rub on the cream several times a day. I'm hoping it will do the trick. Thanks to Libby Garvey for telling us about Sandra!
The endoscopic ultrasound and biopsy last week was not a lot of fun. I'm not sure why it upset me so much, because I've been through worse...I think it was a combination of the fear that I've been keeping at the back of my mind all this time that it would turn out to be pancreatic cancer, and that having to be back in the hospital getting poked and prodded brought back unpleasant memories. Of course I didn't feel the procedure itself...they put me under. The worst thing to me was a plastic thing they stuck in my mouth, to open it and protect my teeth during the procedure...but they didn't warn me ahead of time, and suddenly stuck it in there...I couldn't swallow, and it felt like a gag was put on me. I like to know what's coming, and I wish they had explained it first, and told me that I would only be aware of it for mere seconds before going to sleep. Anyway, the good news is that the doctor told me right afterward that he didn't see any signs that the cyst is cancer, it still looks very benign to him; unfortunately, though, I have to wait 6 weeks for the pathology report to come back to be absolutely sure. I have heard 'it looks benign' before, so I won't fully relax until I get that report.
All is still good with the tamoxifen...the very slight nausea I was feeling is gone, and the hot flashes are minimal. I have added more supplements to my daily pile of pills...bee propolis and bee pollen (recommended by Sandra Cope), Quercetin (an anti-oxidant), Seratran (to 'repair, rebuild, and reactivate'), and most days I take probiotics. I am still juicing, and have a glass of fresh veggie juice first thing every morning. Physically, I feel pretty good in general--a normal energy level and a desire to get out and do things. Still experiencing a lot of rib pain on one side from the foob...but otherwise good.
It has been a very strange summer, all in all...I've been through a lot, but it has also been very nice being at home with the kids and just bumming around. I think we are all ready to get back into a normal routine, though...the routine of school for the girls, playgroup/music class/nap time for Griffin, and daily radiation for me. I hope there is a healthy, normal, uneventful fall in store for my family...and for all of you too.
Love you all,
Liz
Monday, August 22, 2011
A Year
It's been one year since I first felt the walnut-sized lump in my breast. Last August I was happily nursing my four-month-old, thinking I might have some kind of infected lymph gland...totally unaware of how completely my life was about to change. I really miss my old life.
Last week I had my CT simulation for radiation therapy. They had me lie on the table so they could position the arm rest, head rest, knee rest etc. exactly right for me; they took photos and a CT scan, so they can create a computer model of me for planning my treatment; I got drawn on by my radiation oncologist (I'm getting rather used to being drawn on); and they tattooed two little dots on my chest, as markers so the radiation beam is aimed exactly the same each time (I didn't feel one of the dots, as it is in my numb area, and the other felt like a little pinch). I will go back for a 'dry run' probably some time next week, and then will start the actual treatments--which will be every day, five days a week, for a total of 33 treatments.
This week I am finally following up on that pancreas thing. Wednesday I will have an endoscopic ultrasound and biopsy. I'll be put to sleep, and then the doctor will send a little ultrasound device down into my stomach so he can look at the cyst on my pancreas...and then he will do a biopsy of it through the stomach wall. I'll be at the hospital for three hours. I am pretty nervous about it, but trying to remain calm and positive.
My foobs are feeling a bit better, or I guess I'm just getting more used to them. At a recent visit to the plastic surgeon, I got my first 'fill'--75 more cc's of saline added to each expander, for a total of 375 cc's. After the fill, my muscles felt better but my ribs hurt a lot more...that is the main discomfort I have now...it's really painful to bend forward, like the top of my rib cage is being crushed by the foob-rocks. The way they fill the expanders, in case anyone is wondering, is this: a magnet is run over the breast to find the metal port inside the expander; when found, they mark the spot with a pen; then they come at you with a GIANT syringe of saline, which scares the hell out of you--but then you realize that you can barely feel the needle going in. It feels strange as the fluid goes in, like it's getting tighter and tighter, but not painful (except the ribs as I mentioned).
I've been on tamoxifen for a few weeks now. I've actually experienced a slight decrease in hot flashes, rather than an increase. I was a bit worried, as I've read that an increase is a good sign that the medicine is working, but my oncologist told me not to worry...it just means that my ovaries might be waking up a bit from the chemo-induced hot flashes. The only other side effect I've noticed is a vague, mild queasy feeling that will come over me a few times a day, which passes after just a minute or so. So all in all, so far so good. I've never been a pill-taker, never used to take even a multi-vitamin...but here is what I take now every night before bed: tamoxifen, vitamin C, vitamin D, B-complex, Cal/Mag, Immune Defense with IP-6 (boosts killer cell activity), and a digestive enzyme. It helps to swallow them all with dark chocolate almond milk! I'm also taking homeopathic arnica for the bruised ribs, and a homeopathic remedy called Lymph Tone, to help with lymph drainage and flow since I am now a bit short on lymph nodes.
Emma is off to her senior year at Virginia Commonwealth University. Lily and India are gearing up for the new school year...they have been shopping for their school supplies and new shoes (both had huge foot growth spurts this summer). They are excited to be starting at Patrick Henry (in 5th and 1st grades respectively), our local public school...finally they will be going to school with their neighborhood friends. Griffin is the cutest 16-mo-old ever, and is doing all kinds of amazing things: climbing ladders, walk-running REALLY fast so that mom can't keep up, kissing and hugging his sisters, learning the names of different Thomas the Train engines (they all look the same to me), and saying a few words (uh oh, beep beep, baby). He seems to be entering the 'terrible twos' a bit early, with frequent screaming and tantrum-like behavior...which I believe is due to not being able to nurse. Nursing diffuses toddler frustration like nothing else. We never experienced the terrible twos with any of the girls. My heart aches with sadness at the loss of our nursing relationship.
Well, that's all for now. I'll keep you all updated on the test results this week and the upcoming radiation treatments. Thank you so much for your continued support and good thoughts and prayers.
Love you all,
Liz
Last week I had my CT simulation for radiation therapy. They had me lie on the table so they could position the arm rest, head rest, knee rest etc. exactly right for me; they took photos and a CT scan, so they can create a computer model of me for planning my treatment; I got drawn on by my radiation oncologist (I'm getting rather used to being drawn on); and they tattooed two little dots on my chest, as markers so the radiation beam is aimed exactly the same each time (I didn't feel one of the dots, as it is in my numb area, and the other felt like a little pinch). I will go back for a 'dry run' probably some time next week, and then will start the actual treatments--which will be every day, five days a week, for a total of 33 treatments.
This week I am finally following up on that pancreas thing. Wednesday I will have an endoscopic ultrasound and biopsy. I'll be put to sleep, and then the doctor will send a little ultrasound device down into my stomach so he can look at the cyst on my pancreas...and then he will do a biopsy of it through the stomach wall. I'll be at the hospital for three hours. I am pretty nervous about it, but trying to remain calm and positive.
My foobs are feeling a bit better, or I guess I'm just getting more used to them. At a recent visit to the plastic surgeon, I got my first 'fill'--75 more cc's of saline added to each expander, for a total of 375 cc's. After the fill, my muscles felt better but my ribs hurt a lot more...that is the main discomfort I have now...it's really painful to bend forward, like the top of my rib cage is being crushed by the foob-rocks. The way they fill the expanders, in case anyone is wondering, is this: a magnet is run over the breast to find the metal port inside the expander; when found, they mark the spot with a pen; then they come at you with a GIANT syringe of saline, which scares the hell out of you--but then you realize that you can barely feel the needle going in. It feels strange as the fluid goes in, like it's getting tighter and tighter, but not painful (except the ribs as I mentioned).
I've been on tamoxifen for a few weeks now. I've actually experienced a slight decrease in hot flashes, rather than an increase. I was a bit worried, as I've read that an increase is a good sign that the medicine is working, but my oncologist told me not to worry...it just means that my ovaries might be waking up a bit from the chemo-induced hot flashes. The only other side effect I've noticed is a vague, mild queasy feeling that will come over me a few times a day, which passes after just a minute or so. So all in all, so far so good. I've never been a pill-taker, never used to take even a multi-vitamin...but here is what I take now every night before bed: tamoxifen, vitamin C, vitamin D, B-complex, Cal/Mag, Immune Defense with IP-6 (boosts killer cell activity), and a digestive enzyme. It helps to swallow them all with dark chocolate almond milk! I'm also taking homeopathic arnica for the bruised ribs, and a homeopathic remedy called Lymph Tone, to help with lymph drainage and flow since I am now a bit short on lymph nodes.
Emma is off to her senior year at Virginia Commonwealth University. Lily and India are gearing up for the new school year...they have been shopping for their school supplies and new shoes (both had huge foot growth spurts this summer). They are excited to be starting at Patrick Henry (in 5th and 1st grades respectively), our local public school...finally they will be going to school with their neighborhood friends. Griffin is the cutest 16-mo-old ever, and is doing all kinds of amazing things: climbing ladders, walk-running REALLY fast so that mom can't keep up, kissing and hugging his sisters, learning the names of different Thomas the Train engines (they all look the same to me), and saying a few words (uh oh, beep beep, baby). He seems to be entering the 'terrible twos' a bit early, with frequent screaming and tantrum-like behavior...which I believe is due to not being able to nurse. Nursing diffuses toddler frustration like nothing else. We never experienced the terrible twos with any of the girls. My heart aches with sadness at the loss of our nursing relationship.
Well, that's all for now. I'll keep you all updated on the test results this week and the upcoming radiation treatments. Thank you so much for your continued support and good thoughts and prayers.
Love you all,
Liz
Sunday, July 31, 2011
A New Normal
I have foobs. That's fake boobs. It's slowly becoming my new normal...but it hits me all over again at least once a day--my breasts are gone, and one nipple will soon be gone too. I think it will be a lot better once the reconstruction is done, though...then at least my foobs will be made of my own flesh, instead of these heavy, hard, uncomfortable expanders.
I also have brand new eyebrows and eyelashes! And I'm shaving my pits and legs again...yay. My head is sporting a crop of fuzz...not really a head of hair yet, but I have stopped wearing hats and scarves in public. It's just too hot, plus I'm really tired of wearing them. I donated a bunch of cancer hats to the Cancer Resource Center at the hospital...they have a 'hat room' for people who need them. And I'm going to send back the wigs and scarves that my Aunt Mary loaned me. It feels good to be purging my house of these things.
I start taking tamoxifen tomorrow. One pill a day for 5 to 10 years. It is supposed to increase the hot flashes...it's actually a good sign if it does, because it means it's working. There are also some other possible minor side effects, and a slight increased risk of uterine cancer. That worries me, but I'm going to concentrate on the benefits--it's going to help keep cancer cells from growing back!--and try not to worry about it.
This week I saw a physical therapist, who taught me all about lymphedema and strategies to try to prevent it...and gave me exercises to strengthen and stretch my shoulders and arms, to get my range of motion back. So now it's up to me to actually DO the exercises, plus try to do some kind of regular exercise like walking...things I am not used to making time for.
This week I also had a counseling session, and went to the support group...both were extremely helpful to me in dealing with a lot of my emotional stuff. I also started driving again, although I haven't yet been up to going out alone with Griffin. I still feel like I need help with him, carrying him and getting him in and out of his car seat etc. He is a heavy and active toddler! Going out with just the girls is fine, though...one of my first times driving was to take them for their school physicals.
I want to say a HUGE thank you to Heather and Casey, who are planning a fund-raising century bike ride which will raise money for us...a lot of their friends and family have already donated to us via the ride, and we are so very very grateful to them...as well as to other generous people who have also contributed money to us recently. It is impossible to express how overwhelmed and thankful we are. Some of the ways we are using this money: paying some of the smaller medical bills; prescriptions and supplements for me; splurging on organic veggies for my morning anti-cancer juice; buying new ultra-soft stretchy bras and camis to wear post-mastectomy; taking the kids to the doctor. Thank you thank you thank you!
It's hard to believe it will be August tomorrow...summer will be ending soon, radiation treatments will be beginning soon. I'll keep you updated on how that goes.
Love you all,
Liz
I also have brand new eyebrows and eyelashes! And I'm shaving my pits and legs again...yay. My head is sporting a crop of fuzz...not really a head of hair yet, but I have stopped wearing hats and scarves in public. It's just too hot, plus I'm really tired of wearing them. I donated a bunch of cancer hats to the Cancer Resource Center at the hospital...they have a 'hat room' for people who need them. And I'm going to send back the wigs and scarves that my Aunt Mary loaned me. It feels good to be purging my house of these things.
I start taking tamoxifen tomorrow. One pill a day for 5 to 10 years. It is supposed to increase the hot flashes...it's actually a good sign if it does, because it means it's working. There are also some other possible minor side effects, and a slight increased risk of uterine cancer. That worries me, but I'm going to concentrate on the benefits--it's going to help keep cancer cells from growing back!--and try not to worry about it.
This week I saw a physical therapist, who taught me all about lymphedema and strategies to try to prevent it...and gave me exercises to strengthen and stretch my shoulders and arms, to get my range of motion back. So now it's up to me to actually DO the exercises, plus try to do some kind of regular exercise like walking...things I am not used to making time for.
This week I also had a counseling session, and went to the support group...both were extremely helpful to me in dealing with a lot of my emotional stuff. I also started driving again, although I haven't yet been up to going out alone with Griffin. I still feel like I need help with him, carrying him and getting him in and out of his car seat etc. He is a heavy and active toddler! Going out with just the girls is fine, though...one of my first times driving was to take them for their school physicals.
I want to say a HUGE thank you to Heather and Casey, who are planning a fund-raising century bike ride which will raise money for us...a lot of their friends and family have already donated to us via the ride, and we are so very very grateful to them...as well as to other generous people who have also contributed money to us recently. It is impossible to express how overwhelmed and thankful we are. Some of the ways we are using this money: paying some of the smaller medical bills; prescriptions and supplements for me; splurging on organic veggies for my morning anti-cancer juice; buying new ultra-soft stretchy bras and camis to wear post-mastectomy; taking the kids to the doctor. Thank you thank you thank you!
It's hard to believe it will be August tomorrow...summer will be ending soon, radiation treatments will be beginning soon. I'll keep you updated on how that goes.
Love you all,
Liz
Friday, July 15, 2011
Nipple Confusion
This week has been confusing and emotional for me. After getting the 'all-clear' last week from my surgeon that keeping both nipples was safe, I got a call this week from the senior member of the surgical team at the Center for Breast Health; she told me that my pathology report had come across her desk, that a 2mm margin is not enough, and that she is very nervous about me keeping the right nipple. My radiation oncologist agrees that it is a gray area, it would be very controversial to keep it, and he would not advise it, although it is ultimately my decision. Unfortunately my surgeon is out of town for a month, so I can't discuss it with her and find out how she came up with the 2mm number. Now that I'm doing more research on it, everything I read says I was not a good candidate for nipple-sparing surgery. Luckily, I don't have to do anything right away...if I decide not to save it, I can get it removed later during my reconstruction surgery...so I have some months to figure it out.
My appointment with Dr. Denduluri, my oncologist, was also emotional. When I walked into her office, I was reminded of the first time I went in there to meet her after I was just diagnosed...and I started crying before we even began our appointment. But she was very encouraging and positive. I was worried that my pathology report was especially full of CAPITAL LETTERS (they put anything that was found to be cancerous in caps)...but she said it wasn't as bad as it seemed. I do know now what stage my cancer was; stage IIIa. She gave me my prescription for Tamoxifen, which I will start taking on August 1st...this is the hormone therapy drug which will keep estrogen from feeding any future cancer cells that might decide to appear. I will take it for at least five years. It is supposed to cause even more hot flashes--as if I wasn't having enough already. I also got a prescription for physical therapy, which I am looking forward to taking advantage of; hopefully it will help me avoid getting lymphedema.
Meanwhile, I am recovering well from the surgery. I took myself off the Percoset today. I don't really need it anymore, and Tylenol is working fine. The pain has lessened quite a bit, and I'm mostly feeling a lot of discomfort rather than pain. It's a very weird feeling of being raw UNDER my skin, as well as a lot of pressure from the implants which feel like rocks. My right arm still has a lot of numbness, and my armpit is completely numb...I hope that will gradually improve. My strength is going to take a while to come back, I'm afraid.
I have had a lot of wonderful visitors this week, who have helped with everything from laundry to dishes to taking care of Griffin and the girls. Thank you a bunch to Beth, Sara, Lisa, Jessica C, and Jessica H; and a huge Thanks to Kim, Arlene, Sara and Jess C for the delicious meals this week! And I don't know what I would have done without the help of Emma, Paul, Mom and Dad, and of course Nathan. Thank you Kerstin for being there for me when I needed you. And thanks again to Rashne for a wonderful camp for Lily!
Love you all,
Liz
My appointment with Dr. Denduluri, my oncologist, was also emotional. When I walked into her office, I was reminded of the first time I went in there to meet her after I was just diagnosed...and I started crying before we even began our appointment. But she was very encouraging and positive. I was worried that my pathology report was especially full of CAPITAL LETTERS (they put anything that was found to be cancerous in caps)...but she said it wasn't as bad as it seemed. I do know now what stage my cancer was; stage IIIa. She gave me my prescription for Tamoxifen, which I will start taking on August 1st...this is the hormone therapy drug which will keep estrogen from feeding any future cancer cells that might decide to appear. I will take it for at least five years. It is supposed to cause even more hot flashes--as if I wasn't having enough already. I also got a prescription for physical therapy, which I am looking forward to taking advantage of; hopefully it will help me avoid getting lymphedema.
Meanwhile, I am recovering well from the surgery. I took myself off the Percoset today. I don't really need it anymore, and Tylenol is working fine. The pain has lessened quite a bit, and I'm mostly feeling a lot of discomfort rather than pain. It's a very weird feeling of being raw UNDER my skin, as well as a lot of pressure from the implants which feel like rocks. My right arm still has a lot of numbness, and my armpit is completely numb...I hope that will gradually improve. My strength is going to take a while to come back, I'm afraid.
I have had a lot of wonderful visitors this week, who have helped with everything from laundry to dishes to taking care of Griffin and the girls. Thank you a bunch to Beth, Sara, Lisa, Jessica C, and Jessica H; and a huge Thanks to Kim, Arlene, Sara and Jess C for the delicious meals this week! And I don't know what I would have done without the help of Emma, Paul, Mom and Dad, and of course Nathan. Thank you Kerstin for being there for me when I needed you. And thanks again to Rashne for a wonderful camp for Lily!
Love you all,
Liz
Friday, July 8, 2011
Update from Liz: Pathology Report
Liz writes:
"I saw my surgeon today, and got my pathology report. It's very long and complicated, and I'll be going over it in more detail with my oncologist soon. But here are the major points in a nutshell:
1. I get to keep my nipples! There was just enough (2mm) of a clean margin to make keeping the right one safe, and the left one was fine. Very glad about that.
2. It turns out doing the bilateral mastectomy was a very good choice. Some stuff was found in the left breast, which never showed up on the MRIs or mammograms, that is abnormal. Not pre-cancer, but kind of like pre-pre-cancer. It's called atypical intraductal epithelial hyperplasia. It might never have developed into cancer, but I'm relieved that I'll never have to worry about it.
3. My surgeon removed 27 lymph nodes, and cancer was found in 6 of them. The report says metastatic carcinoma was found in the 6 nodes. That word (metastatic) is scaring me. The surgeon didn't mention it, but now I am very anxious to discuss this with my oncologist. I think it means that the cancer had moved from the breast into the lymph nodes...which I already knew...but seeing the word in the report is scary.
4. There was a lot of bad stuff in my right breast: multiple small spots of invasive ductal carcinoma, measuring up to .6cm; the larger and smaller tumors that were showing up all this time on the scans, which the chemo reduced but were still there, the larger one which was in a lymph node measuring 2.3cm; multiple microcalcifications; an extensive field of high-grade ductal carcinoma in situ (DCIS--stage 1 breast cancer). There are a lot of other technical terms in that section of the report, which I will be asking my oncologist to interpret.
5. All of that bad stuff is OUT of me now! I am in shock at the extent of the cancer (I knew it was bad, but seeing it written in the report made it so frighteningly real), but am relieved beyond words that it is now out of my body.
I am so grateful that I will be able to get radiation therapy (starting end of August), which will be kind of like a "clean-up crew" coming in after the surgery/chemo and zapping any microscopic bad cells that might possibly be lingering. And so grateful as well that I will be able to benefit from Tamoxifen, the long-term drug that will keep estrogen and progesterone from feeding any more cancer cells in the future. I'm reading the book The Emperor of All Maladies--a Biography of Cancer; it's a fascinating book so far, and it makes me so thankful that I'm living in this time and have such a good chance of surviving. Just in my lifetime, chemotherapy (the way it's used today, with combinations of drugs) has been developed from an idea to reality, and even more recently Tamoxifen and other hormone therapies have been invented. To all the scientists and doctors who developed all these ways of fighting cancer, which used to be thought of as impossible to treat let alone cure, I am forever grateful.
A big huge thank you to Kara and Alexa, who brought us two more delicious meals this week, and to all the wonderful ladies who have had the girls over for playdates: Rashne, Arlene, Adele, Stacey, Janet, and Kathy! Go Camp Green! Thank you Kim, for your bravery and friendship, which has inspired me to also be as brave as I can through all of this. Thank you to Kerstin Perini, of the Cancer Resource Center at the hospital, who came to see me twice in hospital and brought the lovely pink basket of breast cancer 'swag', which has been very helpful. (If anyone wants to donate to help provide these comfort baskets to other breast cancer patients, here is the info: www.KeepTheCandleGlowing.org). And thank you to my husband and family...there are not enough words...
I will post again after meeting with the oncologist and plastic surgeon next week, and keep you all updated regarding radiation therapy and the pancreas issue.
Love you all,
Liz"
"I saw my surgeon today, and got my pathology report. It's very long and complicated, and I'll be going over it in more detail with my oncologist soon. But here are the major points in a nutshell:
1. I get to keep my nipples! There was just enough (2mm) of a clean margin to make keeping the right one safe, and the left one was fine. Very glad about that.
2. It turns out doing the bilateral mastectomy was a very good choice. Some stuff was found in the left breast, which never showed up on the MRIs or mammograms, that is abnormal. Not pre-cancer, but kind of like pre-pre-cancer. It's called atypical intraductal epithelial hyperplasia. It might never have developed into cancer, but I'm relieved that I'll never have to worry about it.
3. My surgeon removed 27 lymph nodes, and cancer was found in 6 of them. The report says metastatic carcinoma was found in the 6 nodes. That word (metastatic) is scaring me. The surgeon didn't mention it, but now I am very anxious to discuss this with my oncologist. I think it means that the cancer had moved from the breast into the lymph nodes...which I already knew...but seeing the word in the report is scary.
4. There was a lot of bad stuff in my right breast: multiple small spots of invasive ductal carcinoma, measuring up to .6cm; the larger and smaller tumors that were showing up all this time on the scans, which the chemo reduced but were still there, the larger one which was in a lymph node measuring 2.3cm; multiple microcalcifications; an extensive field of high-grade ductal carcinoma in situ (DCIS--stage 1 breast cancer). There are a lot of other technical terms in that section of the report, which I will be asking my oncologist to interpret.
5. All of that bad stuff is OUT of me now! I am in shock at the extent of the cancer (I knew it was bad, but seeing it written in the report made it so frighteningly real), but am relieved beyond words that it is now out of my body.
I am so grateful that I will be able to get radiation therapy (starting end of August), which will be kind of like a "clean-up crew" coming in after the surgery/chemo and zapping any microscopic bad cells that might possibly be lingering. And so grateful as well that I will be able to benefit from Tamoxifen, the long-term drug that will keep estrogen and progesterone from feeding any more cancer cells in the future. I'm reading the book The Emperor of All Maladies--a Biography of Cancer; it's a fascinating book so far, and it makes me so thankful that I'm living in this time and have such a good chance of surviving. Just in my lifetime, chemotherapy (the way it's used today, with combinations of drugs) has been developed from an idea to reality, and even more recently Tamoxifen and other hormone therapies have been invented. To all the scientists and doctors who developed all these ways of fighting cancer, which used to be thought of as impossible to treat let alone cure, I am forever grateful.
A big huge thank you to Kara and Alexa, who brought us two more delicious meals this week, and to all the wonderful ladies who have had the girls over for playdates: Rashne, Arlene, Adele, Stacey, Janet, and Kathy! Go Camp Green! Thank you Kim, for your bravery and friendship, which has inspired me to also be as brave as I can through all of this. Thank you to Kerstin Perini, of the Cancer Resource Center at the hospital, who came to see me twice in hospital and brought the lovely pink basket of breast cancer 'swag', which has been very helpful. (If anyone wants to donate to help provide these comfort baskets to other breast cancer patients, here is the info: www.KeepTheCandleGlowing.org). And thank you to my husband and family...there are not enough words...
I will post again after meeting with the oncologist and plastic surgeon next week, and keep you all updated regarding radiation therapy and the pancreas issue.
Love you all,
Liz"
Thursday, July 7, 2011
Post-surgery update
Liz writes:
It's over...the surgery is done, which is a big relief. I had such anxiety about it, so I'm just so glad it's over with. It went well, I slept through a lot of the first night and day afterward. Whenever I was awake the first night, I felt pretty miserable, especially when the nurse made me get out of bed to try to pee...I got really nauseous and dizzy. But since day 2, I've been feeling a lot better than I expected. I got home about 5pm the day after surgery. The hardest part right now is not being able to pick up Griffin and care for him, and not being able to give the girls a big hug. The drains aren't fun (I have two drains coming out from each side, which drain fluid so it doesn't build up and put pressure on the surgical sites)...they need to be emptied several time a day. My pain is being managed well by a continuous pain pump, as well as oral medication. I'm taking antibiotics, vitamin c, an immune booster, a homeopathic remedy, and probiotics...to hopefully stay healthy and avoid infection. My right arm is numb...hopefully that will go away soon, probably the swelling is pressing on a nerve on that side. I have a good appetite, and am just resting, eating, drinking fluids, and sleeping. Lots of family members and friends are helping with the kids this week, I am so grateful for that. Thanks to Sara, and to Kathy and Topher, for some really yummy meals! And a big thanks to my wonderful husband, my brother, Emma, and Mom and Dad, for being at the hospital with me throughout my stay. And thanks to everyone for your thoughts, prayers, phone calls, emails, and facebook messages...it all has really helped me get through this!
I see my surgeon on Friday and will get the pathology report then. Please pray for my nipples! That sounds really weird to say...but keeping them is very important to me...so am praying that the biopsies taken from them will come back clean. I'll post another update after Friday's appointment.
Love you all,
Liz
It's over...the surgery is done, which is a big relief. I had such anxiety about it, so I'm just so glad it's over with. It went well, I slept through a lot of the first night and day afterward. Whenever I was awake the first night, I felt pretty miserable, especially when the nurse made me get out of bed to try to pee...I got really nauseous and dizzy. But since day 2, I've been feeling a lot better than I expected. I got home about 5pm the day after surgery. The hardest part right now is not being able to pick up Griffin and care for him, and not being able to give the girls a big hug. The drains aren't fun (I have two drains coming out from each side, which drain fluid so it doesn't build up and put pressure on the surgical sites)...they need to be emptied several time a day. My pain is being managed well by a continuous pain pump, as well as oral medication. I'm taking antibiotics, vitamin c, an immune booster, a homeopathic remedy, and probiotics...to hopefully stay healthy and avoid infection. My right arm is numb...hopefully that will go away soon, probably the swelling is pressing on a nerve on that side. I have a good appetite, and am just resting, eating, drinking fluids, and sleeping. Lots of family members and friends are helping with the kids this week, I am so grateful for that. Thanks to Sara, and to Kathy and Topher, for some really yummy meals! And a big thanks to my wonderful husband, my brother, Emma, and Mom and Dad, for being at the hospital with me throughout my stay. And thanks to everyone for your thoughts, prayers, phone calls, emails, and facebook messages...it all has really helped me get through this!
I see my surgeon on Friday and will get the pathology report then. Please pray for my nipples! That sounds really weird to say...but keeping them is very important to me...so am praying that the biopsies taken from them will come back clean. I'll post another update after Friday's appointment.
Love you all,
Liz
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