Last Sunday (Fathers Day, June 20th) was my best day yet! I felt great, didn't need a nap, my drains had started slowing down in their output, etc. I just KNEW I was turning the corner.
Well, never say anything like that out loud, right?!?
The week started off well. Last Monday, the 21st, Neil and I met with an oncologist at Evergreen Hospital for the first time. She was so sweet, and calm, and smart and reassuring, and told me everything I wanted to hear: I don't need radiation (yay!), I don't need chemo (yay!) and I don't need Tamoxifen (yay!). She'd never seen a procedure like mine, so when I 'bared all', she was quite impressed with the results.
The oncologist reiterated the necessity to have my right nipple removed, to mitigate any risk of recurrence, but said I didn't need to rush, since those icky little CA cells are slow growing and have probably been in me for a long time. She agreed that waiting until September would be fine. Stage 2 surgery (nipple off and reconstructed, and hip incisions cleaned up) is scheduled for Sept. 17th, in New Orleans. It will be a shorter surgery (1-2 hours) and I'll only have to be in the hospital overnight. We'll fly down on a Thursday and be back on Monday, so a lot less time away from home.
Last Tuesday, the 22nd, I woke up with achey hips, but didn't think too much about it. I had finished my antibiotics a couple of days before, but didn't think I'd need them anymore, because I thought I'd be pulling my drains in a couple of days. That day was the end of my 4th week and they said the drains would have to stay in for 3-4 weeks, so I assumed I could pull them then. I spoke with the nurse in the Breast Center in N.O. and we went over the log I've been keeping of the drain outputs, and she said they couldn't be pulled because I was still draining too much. ugh! She said I'd need to stay on the antibiotics, too, so she called in another prescription. Good idea. Read on...
I took Josh off to a doctors appointment that afternoon, but my butt/hips continued to ache and I started to feel really crummy. By the time we got home in the early afternoon, I was shivering and so tired. I crawled into bed, thinking I was just over-tired, but when I woke up with a raging fever, I knew it had to be something more. I thought I had the flu. I was feverish on/off all night and by the next day, there was redness that spread out from both incision sites, above and below. And, the output from my drains more than quadrupled. It was pouring out of me! I was freaking out! Neil was calm, and we marked the redness with a sharpey, to keep an eye on it. I started back on the antibiotics.
By Thursday (2 days ago), the fever was gone, and the redness had subsided - phew! I was still not feeling great, but was so much less achey and so much less freaked out, but definitely felt depressed by what felt like a set-back.
Yesterday, my body was feeling a TON better, although the kids and Neil managed to pass on their lovely crud, so I'm now under-the-weather with a cold. But, I know I will survive that. It's not great, and I'm certainly in no shape to go out on this beautiful saturday, but I know there's nothing wrong with my breasts or my hips. From the neck down, I'm great - Yay! I've been drinking tons of fluid and neti-potting it away, taking Probiotics and Wellness Formula like crazy, and resting, resting, resting (any other suggestions for making a cold go away faster? I went to eHow.com, but they didn't have any great words of advice, dang it!).
In the meantime, I've been to BreastCancer.org, where they have discussion boards. There is one board that is devoted to women who have been or are going to the New Orleans hospital that I went to. There are close to 6000 posts there now! I've learned so much more, by talking to the women there, and reading their posts... like maybe my drains will have to be in 9 weeks! egads!! And to give myself a break on how wiped out I am still (sure feeling like a baby here!). So, that's been awesome.
So, that's the skinny now. Hopefully, with the weather maybe finally starting to change in Seattle, and if I can get rid of this stupid cold, things really will turn the corner sooner rather than later, and I'll be back riding my bike and running in no time!
Love you all!
p.s. If you ever find yourself in this boat (and I surely hope you don't, of course!) you must have a Meal Maven set up meals for you. It's been the BEST THING EVAH! And, I mean it! I really, really, really don't know what I'd do without all of them. Thanks, friends!!!!
Saturday, June 26, 2010
Thursday, June 17, 2010
catching up...
Neil keeps bugging me to update my blog, so guess I will, but I'm not sure anybody is reading this anymore. But, if you're like me, and like the details, here goes (don't read on, if you don't want the down and dirty - ha!)...
I'm 3 weeks out from surgery now, and feeling better and better every day (for the most part - it hasn't been a straight upward trajectory, like I wish it was, but it's certainly going up overall).
To back up a bit...
Pre-op Day, Monday, May 24th: We flew down to New Orleans at oh-dark-hundred, Monday, May 24th. We'd just arrived home at midnight the night before, from celebrating with Sam at his graduation from Whitman College the day before. It was an wonderful weekend, and we are so proud of him!
We arrived in New Orleans at about 2pm, and were picked up in a limo provided by The Center For Restorative Breast Surgery, the hospital where I was having my procedure. The service was awesome! The driver was an original New Orleanean, and gave us a tour as we entered the city, showing us the water line on buildings and areas still affected from Hurricane Katrina. It was very interesting and so nice of him to take the time to show us around.
The limo driver took us to the Center, where I had a couple of hours of pre-op appointments at the clinic. I met with: the mastectomy surgeon, a lovely older doc with a LOT of experience, who immediately made me feel at ease, safe and comfortable in her hands; the plastic surgeon, who again, was very calming and obviously knew what he was doing (and sounded exactly like Matthew McConaughey, but didn't really look like him - dang it!), and had more pictures taken (don't do this if you don't have to - rather humiliating...!). I met with the pre-op nurse (sweet, pretty young thing, who immediately wanted to tell me all about her infertility issues, once she found I what I did for a living), and the anesthesiologist, who I swore I'd get in the next life, if he didn't bring me back to my family!! I had a CT scan of my butt (yes, of my butt!) to find the largest, prettiest looking vessels to use for the reconstruction. Those 3 techs/nurses were awesome, too - again, very kind and reassuring and they'd stayed open late just for me, since we arrived so late. One of them even shared that she had been diagnosed with the same type of CA that I had, and had the same type of procedure done awhile ago. That was hugely helpful!
The clinic and hospital were fantastic. The plastic surgeons built the hospital about a year and a half ago. It was beautiful - more like a spa than hospital. It is tiny - only 17 beds - and the only surgery they perform there are what I had done (simultaneous mastectomy and breast reconstruction), or just reconstruction post-mastectomy. They don't do nose reshaping, or eyelid lifts, or tummy tucks, or any other kind of plastic surgery. They specialize ONLY in post-mastectomy reconstruction. They don't do breast implants either - only the flap procedures (butt or tummy).
The limo drove us to our hotel after all my pre-op stuff was done, a quaint hotel near the hospital and the French Quarter, and Neil and I had a fab fish dinner and some good vino to calm the night-before-surgery jitters.
Day 1 - surgery day - Tuesday, May 25th: The limo picked us up from our hotel at 5am and took us to the hospital for surgery. The limo driver this time, was an elegant older man, who had driven hundreds of women back and forth for the Breast Center, and reassured me up one side and down the other, that I was in the best of hands, and all women do well with my surgeon. He just knew I'd be very pleased in the end. He was so kind and just what I needed that morning.
We arrived, were settled right in, in the pre-op room, and before I knew it, I was tearfully saying good bye to Neil, was given Versed (a sedative) and was out!
The next thing I remember was waking up in my hospital room (which felt like 5 minutes later but had actually been 9 hours!) and looked down to see... soft, new breasts! Wow - I couldn't believe it! I had a mastectomy but woke up with breasts! I mean, I knew that was the plan, but it was still stunning!
And I was wired for sound, baby: I had a drain coming out of each breast, 2 doppler wires coming out of each breast, and a drain in each hip. The nurses came in every 15-30 minutes for the first night, hooking the doppler wires up to a machine, to listen for blood flow. My breast tissue was now my hip tissue and fat that they had transplanted into my breasts. The whooshing sound that came from my breasts was a beautiful sound to hear, since I knew then that the tissue was indeed alive!
I made a few phone calls that night, to my kids, I think because I so happy to be ALIVE! I couldn't believe it! All I remember is Mia saying "Ok, mommy. I'm going to hang up now, since you aren't making any sense" and me thinking "I am too making sense! What is she talking about?!?". I am sure I did sound crazy... looking back, I don't remember anything much at all. Neil said I repeated things and fell asleep mid-sentence. Don't ask me why he let me operate heavy machinery (a cell phone) that night, with all the drugs I had on board! ha!
Day 2-5, Tuesday, May 25th through Friday, May 28th, are a blur and I remember very little of them. I didn't do great from the general anesthesia. Very wonky and woozy and dizzy. I was out of bed, though, and walked a lap in the halls the very next day, because the nurses told me to! (I'm a good patient... ;-)).
I was a little nauseated on the 2nd post-op day, which set me off emotionally, since it was the thing I was so worried about before the surgery. Neil had to leave to go home that morning, as well, so that's also why I was a little more out-of-sorts. (Neil left thursday morning, May 27th, and my sister, Carol, arrived later that same day. The limo service drove Neil to the airport and went back and picked up Carol later that day.)
In terms of pain, I wasn't too uncomfortable. I was given narcotics a couple of times, but I was so dizzy and nauseated that after that first post-op day, I settled on Tylenol. I just couldn't take that wonky, woozy feeling.
I showered on the 3rd post-op day. That took a lot of help, but I did it and it felt SO good!!!
Day 5, saturday, May 29th: Discharge day! Carol and I left the hospital and went to a condo I'd rented through VRBO.com (transport via limo provided by the Breast Center again). I've always had good experiences with them, but it didn't work out so well this time for me, because although the condo was cute and as pictured on the website, it was extremely tiny and SMELLED BAD! It was horrible! I had a terrible night that first night out of the hospital. My sister was SO patient with me, and kept me from completely going insane. My advice, if you ever rent through vrbo.com, is call ahead and have somebody do a sniff test for you!!
Mostly, I was having one good day, with the next day being not so good, and then a good day, followed by a not-so-good day.
We left bright and early the next day for a hotel, the Hilton Homewood Suites, which was perfect. Roomy and spacious for the 2 of us. We could eat in or go out, since it had a little kitchenette and was close enough to the French Quarter to walk to, but not in the thick of things, so was quiet.
Day 6, Sunday, May 30th: We left the condo for the hotel (via limo). We strolled up to the French Quarter, walked down Bourbon Street and around, and back again, and called it a day. That was about a 10 block walk for me and it was all I could handle. N.O. is an "open-container" (for alcohol) city, too, so it was wild to see people walking around (stumbing around) with their open bottles or cups of beer, or tall Margarita glasses. It made me a bit uneasy to be around this crowd, so I couldn't handle more than a couple of hours of it.
It was hot in New Orleans. Perfect for us moss-covered Pacific Northwesterners! New Orleans is a bit depressing in some areas: boarded up buildings, falling down houses, etc., but so interesting in other areas. The architecture is so completely different than the NW.
Day 7, Monday, May 31st: We took a cab to the French Market, wandered around, bought a few things, had a great lunch, and had beignets and latte's at the famous Cafe DuMond. Yummy! It was SO crowded, though, and quite overwhelming at one point, when it started to pour and everybody who had been outside came dashing in for cover (they have BIG rain in the south!), so it got very crowded very fast, and very loud!! My sister walked in front of me, to protect my sore, swollen body, which helped. I didn't want anybody near me!
Day 8, Tuesday, June 1st: We hopped on a street car and went due west for 7 miles. We traveled out past Tulane University, where the grand old Southern homes are. Apparently there are approx 7000 homes on the historic register in New Orleans! We saw a lot of them! We stopped and had lunch at a very quaint french bakery/deli. I had my post-op appointment (transport via limo) with the plastic surgeon that day, who gave me an A+ for recovery!
Being a tourist was tiring, but loved getting out and seeing the city - so just pushed on through! My sis was there to catch me, if I stumbled around - at least, that was my thinking!
I also received my biopsy reports that day. My left breast was totally clear and my right breast showed that although I had diffusely-spread, multi-focal DCIS, it was all contained in the ducts. Nothing invasive seen and all 4 nodes they'd taken and biopsied were clean! yay!! I was so relieved to hear this, I started to cry!
Day 9, Wednesday, June 2nd: Home again! We left for the airport (via limo again!) at 5am, flew through Chicago and got home by 2pm. It was SO nice to be home again!!!
The bad/not-so-great news: About an hour after I walked in the door on that wednesday, I received a call from the mastectomy surgeon saying she'd poured over my pathology reports one more time, and came to the conclusion that she didn't get as clean of margins as she hoped, on my right nipple, so I have to have it taken off. I knew there was a possibility of this going into it, but a slim one (only about 10% chance, since my DCIS seemed to be well back into my breast and not close to the nipple at all). I was disappointed to hear this, of course, but also know that it's just a tiny little bump in the road, not a huge set-back. I just wanted to be able to say "I'm 100% cancer-free!" and all I can say now is that I'm about 99% sure I'm cancer-free. Dang it! The surgeon didn't say she left bad cells behind, she just said she wasn't sure, so to be sure, they have to do another little surgery.
It's also disappointing because my breasts look so good with my own nipples. But, they do a pretty good job of being able to re-create a nipple, and with some tatoo'ing (yep - regular tatoo'ing like at Joe's Dragon Tatoo Inn!) it'll be hard to tell.
I've been home 2 weeks now, and have kept up a very busy schedule of napping and reading, and napping some more! I was just saying to Neil today, that it is amazing how much one girl can sleep. I have to sleep on my back still, so maybe I'm not sleeping super deep at night? I don't know. I just know that by about 1 or 2pm I hit a wall and need to take a nap. I have been also trying to get out for a walk each day, but since the weather's been so up and down, it hasn't been every day.
In terms of incisions and what's going on with my breasts and hips, here's the nitty gritty:
Breasts: First off, they look great! Oh yea, baby - you heard me... they are actually quite spectacular. MUCH better than the old pair of knockers I left behind in NO. :-) I have tiny little incisions that go just under the areola and down into the crease under the breast. I don't think I'll even be able to see the incisions in a few months, they're so tiny. My breasts are bigger than the original pair, too - there's still some swelling, though, so I'm not sure what size they'll settle into. I'm thinking I might have them taken down a notch or 2 but my sisters think I should leave them the way they are! They're round and soft. They feel just like me! yay!
Hips: I've got these knarly-looking 7 or 8 inch incisions on both hips, and still have drains coming out of them. They don't really hurt, except when I bump them or sit up too fast. The place where the drains come out of the hips is probably the most tender area on my body. And because they've been in there so long, they're getting more red and more tender. I can't wait to get the drains out, but I'm still putting out a lot of fluid, so it'll probably be another week. ugh!
The area of the hips where they took the fat and tissue is at the top of my butt, and starts about 3 to 4 inches below my hip bones, and go straight back towards my butt crack (I told you I was going to get graphic here!).
I have to go back to New Orleans in September for what they call a "2nd Stage" operation, where they revise the hip incision sites (they kind of have to smooth things out a bit, since there's kind of a divot where they took the fat and tissue out) and also take off the right nipple. That's when they'd do a little lipo to my breasts, as well, if I didn't want to stay as big as I am right now.
I am feeling better and better each day, and thanks to all the wonderful meals friends have been delivering, my only job has been to sleep and rest and recover! (Well, not quite, since my house is full of all 4 of my kids + many of their friends, but almost that's all I'm doing...)
Love to you all, and please call and take me for a walk, if you're in the area. I'd love to get out!! oxox
I'm 3 weeks out from surgery now, and feeling better and better every day (for the most part - it hasn't been a straight upward trajectory, like I wish it was, but it's certainly going up overall).
To back up a bit...
Pre-op Day, Monday, May 24th: We flew down to New Orleans at oh-dark-hundred, Monday, May 24th. We'd just arrived home at midnight the night before, from celebrating with Sam at his graduation from Whitman College the day before. It was an wonderful weekend, and we are so proud of him!
We arrived in New Orleans at about 2pm, and were picked up in a limo provided by The Center For Restorative Breast Surgery, the hospital where I was having my procedure. The service was awesome! The driver was an original New Orleanean, and gave us a tour as we entered the city, showing us the water line on buildings and areas still affected from Hurricane Katrina. It was very interesting and so nice of him to take the time to show us around.
The limo driver took us to the Center, where I had a couple of hours of pre-op appointments at the clinic. I met with: the mastectomy surgeon, a lovely older doc with a LOT of experience, who immediately made me feel at ease, safe and comfortable in her hands; the plastic surgeon, who again, was very calming and obviously knew what he was doing (and sounded exactly like Matthew McConaughey, but didn't really look like him - dang it!), and had more pictures taken (don't do this if you don't have to - rather humiliating...!). I met with the pre-op nurse (sweet, pretty young thing, who immediately wanted to tell me all about her infertility issues, once she found I what I did for a living), and the anesthesiologist, who I swore I'd get in the next life, if he didn't bring me back to my family!! I had a CT scan of my butt (yes, of my butt!) to find the largest, prettiest looking vessels to use for the reconstruction. Those 3 techs/nurses were awesome, too - again, very kind and reassuring and they'd stayed open late just for me, since we arrived so late. One of them even shared that she had been diagnosed with the same type of CA that I had, and had the same type of procedure done awhile ago. That was hugely helpful!
The clinic and hospital were fantastic. The plastic surgeons built the hospital about a year and a half ago. It was beautiful - more like a spa than hospital. It is tiny - only 17 beds - and the only surgery they perform there are what I had done (simultaneous mastectomy and breast reconstruction), or just reconstruction post-mastectomy. They don't do nose reshaping, or eyelid lifts, or tummy tucks, or any other kind of plastic surgery. They specialize ONLY in post-mastectomy reconstruction. They don't do breast implants either - only the flap procedures (butt or tummy).
The limo drove us to our hotel after all my pre-op stuff was done, a quaint hotel near the hospital and the French Quarter, and Neil and I had a fab fish dinner and some good vino to calm the night-before-surgery jitters.
Day 1 - surgery day - Tuesday, May 25th: The limo picked us up from our hotel at 5am and took us to the hospital for surgery. The limo driver this time, was an elegant older man, who had driven hundreds of women back and forth for the Breast Center, and reassured me up one side and down the other, that I was in the best of hands, and all women do well with my surgeon. He just knew I'd be very pleased in the end. He was so kind and just what I needed that morning.
We arrived, were settled right in, in the pre-op room, and before I knew it, I was tearfully saying good bye to Neil, was given Versed (a sedative) and was out!
The next thing I remember was waking up in my hospital room (which felt like 5 minutes later but had actually been 9 hours!) and looked down to see... soft, new breasts! Wow - I couldn't believe it! I had a mastectomy but woke up with breasts! I mean, I knew that was the plan, but it was still stunning!
And I was wired for sound, baby: I had a drain coming out of each breast, 2 doppler wires coming out of each breast, and a drain in each hip. The nurses came in every 15-30 minutes for the first night, hooking the doppler wires up to a machine, to listen for blood flow. My breast tissue was now my hip tissue and fat that they had transplanted into my breasts. The whooshing sound that came from my breasts was a beautiful sound to hear, since I knew then that the tissue was indeed alive!
I made a few phone calls that night, to my kids, I think because I so happy to be ALIVE! I couldn't believe it! All I remember is Mia saying "Ok, mommy. I'm going to hang up now, since you aren't making any sense" and me thinking "I am too making sense! What is she talking about?!?". I am sure I did sound crazy... looking back, I don't remember anything much at all. Neil said I repeated things and fell asleep mid-sentence. Don't ask me why he let me operate heavy machinery (a cell phone) that night, with all the drugs I had on board! ha!
Day 2-5, Tuesday, May 25th through Friday, May 28th, are a blur and I remember very little of them. I didn't do great from the general anesthesia. Very wonky and woozy and dizzy. I was out of bed, though, and walked a lap in the halls the very next day, because the nurses told me to! (I'm a good patient... ;-)).
I was a little nauseated on the 2nd post-op day, which set me off emotionally, since it was the thing I was so worried about before the surgery. Neil had to leave to go home that morning, as well, so that's also why I was a little more out-of-sorts. (Neil left thursday morning, May 27th, and my sister, Carol, arrived later that same day. The limo service drove Neil to the airport and went back and picked up Carol later that day.)
In terms of pain, I wasn't too uncomfortable. I was given narcotics a couple of times, but I was so dizzy and nauseated that after that first post-op day, I settled on Tylenol. I just couldn't take that wonky, woozy feeling.
I showered on the 3rd post-op day. That took a lot of help, but I did it and it felt SO good!!!
Day 5, saturday, May 29th: Discharge day! Carol and I left the hospital and went to a condo I'd rented through VRBO.com (transport via limo provided by the Breast Center again). I've always had good experiences with them, but it didn't work out so well this time for me, because although the condo was cute and as pictured on the website, it was extremely tiny and SMELLED BAD! It was horrible! I had a terrible night that first night out of the hospital. My sister was SO patient with me, and kept me from completely going insane. My advice, if you ever rent through vrbo.com, is call ahead and have somebody do a sniff test for you!!
Mostly, I was having one good day, with the next day being not so good, and then a good day, followed by a not-so-good day.
We left bright and early the next day for a hotel, the Hilton Homewood Suites, which was perfect. Roomy and spacious for the 2 of us. We could eat in or go out, since it had a little kitchenette and was close enough to the French Quarter to walk to, but not in the thick of things, so was quiet.
Day 6, Sunday, May 30th: We left the condo for the hotel (via limo). We strolled up to the French Quarter, walked down Bourbon Street and around, and back again, and called it a day. That was about a 10 block walk for me and it was all I could handle. N.O. is an "open-container" (for alcohol) city, too, so it was wild to see people walking around (stumbing around) with their open bottles or cups of beer, or tall Margarita glasses. It made me a bit uneasy to be around this crowd, so I couldn't handle more than a couple of hours of it.
It was hot in New Orleans. Perfect for us moss-covered Pacific Northwesterners! New Orleans is a bit depressing in some areas: boarded up buildings, falling down houses, etc., but so interesting in other areas. The architecture is so completely different than the NW.
Day 7, Monday, May 31st: We took a cab to the French Market, wandered around, bought a few things, had a great lunch, and had beignets and latte's at the famous Cafe DuMond. Yummy! It was SO crowded, though, and quite overwhelming at one point, when it started to pour and everybody who had been outside came dashing in for cover (they have BIG rain in the south!), so it got very crowded very fast, and very loud!! My sister walked in front of me, to protect my sore, swollen body, which helped. I didn't want anybody near me!
Day 8, Tuesday, June 1st: We hopped on a street car and went due west for 7 miles. We traveled out past Tulane University, where the grand old Southern homes are. Apparently there are approx 7000 homes on the historic register in New Orleans! We saw a lot of them! We stopped and had lunch at a very quaint french bakery/deli. I had my post-op appointment (transport via limo) with the plastic surgeon that day, who gave me an A+ for recovery!
Being a tourist was tiring, but loved getting out and seeing the city - so just pushed on through! My sis was there to catch me, if I stumbled around - at least, that was my thinking!
I also received my biopsy reports that day. My left breast was totally clear and my right breast showed that although I had diffusely-spread, multi-focal DCIS, it was all contained in the ducts. Nothing invasive seen and all 4 nodes they'd taken and biopsied were clean! yay!! I was so relieved to hear this, I started to cry!
Day 9, Wednesday, June 2nd: Home again! We left for the airport (via limo again!) at 5am, flew through Chicago and got home by 2pm. It was SO nice to be home again!!!
The bad/not-so-great news: About an hour after I walked in the door on that wednesday, I received a call from the mastectomy surgeon saying she'd poured over my pathology reports one more time, and came to the conclusion that she didn't get as clean of margins as she hoped, on my right nipple, so I have to have it taken off. I knew there was a possibility of this going into it, but a slim one (only about 10% chance, since my DCIS seemed to be well back into my breast and not close to the nipple at all). I was disappointed to hear this, of course, but also know that it's just a tiny little bump in the road, not a huge set-back. I just wanted to be able to say "I'm 100% cancer-free!" and all I can say now is that I'm about 99% sure I'm cancer-free. Dang it! The surgeon didn't say she left bad cells behind, she just said she wasn't sure, so to be sure, they have to do another little surgery.
It's also disappointing because my breasts look so good with my own nipples. But, they do a pretty good job of being able to re-create a nipple, and with some tatoo'ing (yep - regular tatoo'ing like at Joe's Dragon Tatoo Inn!) it'll be hard to tell.
I've been home 2 weeks now, and have kept up a very busy schedule of napping and reading, and napping some more! I was just saying to Neil today, that it is amazing how much one girl can sleep. I have to sleep on my back still, so maybe I'm not sleeping super deep at night? I don't know. I just know that by about 1 or 2pm I hit a wall and need to take a nap. I have been also trying to get out for a walk each day, but since the weather's been so up and down, it hasn't been every day.
In terms of incisions and what's going on with my breasts and hips, here's the nitty gritty:
Breasts: First off, they look great! Oh yea, baby - you heard me... they are actually quite spectacular. MUCH better than the old pair of knockers I left behind in NO. :-) I have tiny little incisions that go just under the areola and down into the crease under the breast. I don't think I'll even be able to see the incisions in a few months, they're so tiny. My breasts are bigger than the original pair, too - there's still some swelling, though, so I'm not sure what size they'll settle into. I'm thinking I might have them taken down a notch or 2 but my sisters think I should leave them the way they are! They're round and soft. They feel just like me! yay!
Hips: I've got these knarly-looking 7 or 8 inch incisions on both hips, and still have drains coming out of them. They don't really hurt, except when I bump them or sit up too fast. The place where the drains come out of the hips is probably the most tender area on my body. And because they've been in there so long, they're getting more red and more tender. I can't wait to get the drains out, but I'm still putting out a lot of fluid, so it'll probably be another week. ugh!
The area of the hips where they took the fat and tissue is at the top of my butt, and starts about 3 to 4 inches below my hip bones, and go straight back towards my butt crack (I told you I was going to get graphic here!).
I have to go back to New Orleans in September for what they call a "2nd Stage" operation, where they revise the hip incision sites (they kind of have to smooth things out a bit, since there's kind of a divot where they took the fat and tissue out) and also take off the right nipple. That's when they'd do a little lipo to my breasts, as well, if I didn't want to stay as big as I am right now.
I am feeling better and better each day, and thanks to all the wonderful meals friends have been delivering, my only job has been to sleep and rest and recover! (Well, not quite, since my house is full of all 4 of my kids + many of their friends, but almost that's all I'm doing...)
Love to you all, and please call and take me for a walk, if you're in the area. I'd love to get out!! oxox
Tuesday, June 1, 2010
Only the BEST NEWS EVER
There was one more piece of news we have been waiting for, and that is the post surgical path report from the excised tissue. Today we got the news... NO EVIDENCE OF MALIGNANCY!
Finally, even though we were positive about the prospects since her nodes were free of cancer, this news allows Melissa to rest assured that she has put breast cancer behind her.
YES!
Finally, even though we were positive about the prospects since her nodes were free of cancer, this news allows Melissa to rest assured that she has put breast cancer behind her.
YES!
Sunday, May 30, 2010
Feeling Better
Well Melis tells me that she had a good day! This is indeed good news. She and Carol are in a Suite in New Orleans where she can sleep without the nursing staff constantly interrupting her. At this point, Melissa just wants to come home....so you know she is doing better!
She sent me pics of her scar on her hip - all I can say is WOW! I am surprised that it does not hurt mush worse, all things considered. Now its just a matter of counting down the days. She will be home on Wednesday.
She sent me pics of her scar on her hip - all I can say is WOW! I am surprised that it does not hurt mush worse, all things considered. Now its just a matter of counting down the days. She will be home on Wednesday.
Saturday, May 29, 2010
Discharged!
Melissa is in good spirits this morning. She was expressing her normal level of "worrying about the kids", and giving me a string of instructions to get this and that done...so she is back to her old self. The fog of her anesthesia has worn off finally, and she was feeling ready to be discharged, which was due to happen around lunch time there.
When the doc checked in with her at the appointed hour, he removed her drains, clipped the doppler wires, pulled her hip numbing tubes and discharged her from the hospital on schedule. YAY!! Now off to the French Quarter for a few days to rest up. She is excited to have a change of scenery.
The plan is for her to have a follow up visit on Tuesday and then fly home on Wednesday. It will be great to see her again.
She tells me that she is pleased with the status of things, from the care she has received to the aesthetic result of her surgery.
Good Times!
When the doc checked in with her at the appointed hour, he removed her drains, clipped the doppler wires, pulled her hip numbing tubes and discharged her from the hospital on schedule. YAY!! Now off to the French Quarter for a few days to rest up. She is excited to have a change of scenery.
The plan is for her to have a follow up visit on Tuesday and then fly home on Wednesday. It will be great to see her again.
She tells me that she is pleased with the status of things, from the care she has received to the aesthetic result of her surgery.
Good Times!
Friday, May 28, 2010
From Sister Carol...(On Behalf of Melissa)
Hello All! Carol here -- Mis-ma-lis is doing better. Nothing like a good night of sleep, combined with a strong woman! She is still done in by it all, so the likelihood of anybody hearing from her is not so likely -- it's been a major surgery which takes major recovery -- so we've been encouraging her to just let us do her correspondence, phoning, texting, emailing for her.
She's having a good day -- had a shower, fresh jammies, breakfast, lunch and a little snack. Tomorrow we'll move to the condo. Trying to nap currently: Rest, rest, rest -- that's the song we're singing! Thank you for your prayers, love and concern . . . she is heartily aware of all that's been pouring in!. . . .-- Carol
She's having a good day -- had a shower, fresh jammies, breakfast, lunch and a little snack. Tomorrow we'll move to the condo. Trying to nap currently: Rest, rest, rest -- that's the song we're singing! Thank you for your prayers, love and concern . . . she is heartily aware of all that's been pouring in!. . . .-- Carol
Feeling a little better
I admit that it is really hard to be away from Melissa right now. I am so thankful that her sister Carol is there taking care of her and being present for her. Carol has been great about communicating with me since she arrived. This morning, she told me that Melissa had a great night of good sleep. Melissa confirmed this too. Those of you who know Melissa well know that this is a girl who needs her sleep!
Also, her pain is so much less right now and she is feeling so much better overall that she is probably going to take a shower today and possibly get discharged from the hospital tomorrow.
Wow, what a week!
Melissa and I have appreciated all the warmth and all the support everyone has offered. Thank you!
Also, her pain is so much less right now and she is feeling so much better overall that she is probably going to take a shower today and possibly get discharged from the hospital tomorrow.
Wow, what a week!
Melissa and I have appreciated all the warmth and all the support everyone has offered. Thank you!
Thursday, May 27, 2010
Away from my Bride
Well I am back in town after leaving Melis' in a world of hurt this morning. She had a pretty rough night. I think it was the combination of not enough pain meds, being over tired, and perhaps not enough water. What that meant was she didn't sleep much, and was nauseated and uncomfortable this morning. I hated to leave, but my driver was there to pick me up and so I asked the nurses to give her special attention till Carrol arrives. After doubling up on the pain meds, and shot of Demerol, Melissa actually slept soundly for a couple of hours and when I talked to her once I landed, she sounded MUCH better. The nursing staff there is amazing and spent time with Melissa this morning holding her hand in my absence. Thanks to them! Carol should be arriving before long and then the tentative plan is to DC her from the hospital tomorrow. We will see.
Wednesday, May 26, 2010
One day down in New Orleans, a few to go
So as the first day after surgery winds down, and as I get ready to leave (first thing in the morning), I can reflect on the past couple of days. First of all, Melissa is battling the tension between trying to get off the meds and trying to get out of the hospital. On meds, she is dizzy and pain free, which allows her to move around, and off meds, her head clears, but she is less comfortable and less likely to move around.
Naturally, the staff and I want her to stay ahead of her pain, which means she needs to take her meds before she gets uncomfortable. So that is the challenge for her sister and the nurses to confront starting tomorrow. The right thing to do is to be pain free and to move around.
I can say this about the situation: I am thrilled with Melissa's status. She is soooooo much better than she was this time yesterday. I am happy that she has taken a few steps, gone potty, eaten meals, and generally been more alive than I expected one day after major surgery. The nurses are amazing, warm, friendly and professional. The surgical hospital is pretty new and in many ways feels like a hotel rather than a hospital. I think that this was a great decision for Melissa. And so far, everything has gone smoothly.
As far as New Orleans is concerned, I have come to love this town. It is hot - 90 degrees, humid - 60% and an old town with character. The houses are historic, the old Street Cars really dated, but so cool. And the town just has a feeling of comfort. The food is delicious, the people warm with their Southern Hospitality, and generally it is a great old town. After Katrina, I wondered about the wisdom of saving New Orleans considering that it is below sea level, and now I am no longer ambivalent I say save New Orleans, no matter the cost. It is a truly historic American city.
Melissa's sweet sister, Carol, arrives tomorrow, and perhaps she will update the blog if Melissa is still out of sorts.
Naturally, the staff and I want her to stay ahead of her pain, which means she needs to take her meds before she gets uncomfortable. So that is the challenge for her sister and the nurses to confront starting tomorrow. The right thing to do is to be pain free and to move around.
I can say this about the situation: I am thrilled with Melissa's status. She is soooooo much better than she was this time yesterday. I am happy that she has taken a few steps, gone potty, eaten meals, and generally been more alive than I expected one day after major surgery. The nurses are amazing, warm, friendly and professional. The surgical hospital is pretty new and in many ways feels like a hotel rather than a hospital. I think that this was a great decision for Melissa. And so far, everything has gone smoothly.
As far as New Orleans is concerned, I have come to love this town. It is hot - 90 degrees, humid - 60% and an old town with character. The houses are historic, the old Street Cars really dated, but so cool. And the town just has a feeling of comfort. The food is delicious, the people warm with their Southern Hospitality, and generally it is a great old town. After Katrina, I wondered about the wisdom of saving New Orleans considering that it is below sea level, and now I am no longer ambivalent I say save New Orleans, no matter the cost. It is a truly historic American city.
Melissa's sweet sister, Carol, arrives tomorrow, and perhaps she will update the blog if Melissa is still out of sorts.
Better and Better and STILL Cancer Free!!
So almost 24 hours after her surgery, and Melissa is resting peacefully. She was able to get out of bed today, she removed all of her tubes, and switched from intravenous to oral pain meds (other than at the donor site). In addition to a simple breakfast of toast, yogurt and fruit, she was able to eat a turkey sandwich at lunch time and she ordered the blackened shrimp for dinner! Sounds like she is getting better to me! Also, we took a walk in the hallway to the snack bar and she snagged a bottle of cranberry juice for herself before we went back. I guess what I am saying is that in just one day, not even, she is much, much better than immediately after surgery. As the meds detox in her system, she is getting better and better moment by moment. So with a great deal of relief to have this behind us, and knowing that there are still a couple of minor procedures to do to finish up the plastic surgery, we are very pleased with Melissa's status at present and her progress overall. Phew!!!!
Day one and Counting
Once Melissa came back from surgery, she was pretty woozy of course, and she was in and out of awareness, often asking the same question again. The meds on board kept her comfortable, but she never was much for meds. The nurses came in and out all night to check on her, and she was awakened for a few minutes as the did their nursing thing. Their primary concern was the blood supply to the transplanted tissue. Listening to the swoosh-swoosh of the Doppler sounds was like listening to good music. She has been sucking on her inspriometer to get her lungs moving and drinking lots of water to get her insides moving. This morning she ate a little breakfast and actually got out of bed - she is sitting up at the moment! We are moving her from IV meds to PO meds to see if that helps the dizziness. She is chatting with her nurse and in good spirits. Right On!!
The nurses are awesome, and the Southern Hospitality here is amazing. Everybody is just so nice.
Its another great Cancer Free day!
The nurses are awesome, and the Southern Hospitality here is amazing. Everybody is just so nice.
Its another great Cancer Free day!
Tuesday, May 25, 2010
OUT OF SURGERY
The surgeon just came in with a big smile. Melissa is in recovery. He was pleased with his work Melissa is doing great, I am on my way to see her.
In Surgery
Well we are in New Orleans for surgery. The surgical center is great, the staff friendly and amazingly generous with their time and words of encouragement.
Melissa is actually in surgery as I type this. The surgical staff has been calling me on and off all day as they move from step to step. I have been keeping busy by wandering around New Orleans, eating their delicious but fattening food, and trying just to keep good thoughts for Melissa's good health and speedy recovery.
The best news is that her lab tests for her biopsied lymph nodes came back NEGATIVE... which means that Melissa is now CANCER FREE!!!!!!! Good times!
Last I heard, she was in the actual reconstruction phase of her surgery, the blood supply all hooked up to the transplanted tissue. In a couple of hours she will be in recovery and I will be able to go down and see her.
Wow!
Melissa is actually in surgery as I type this. The surgical staff has been calling me on and off all day as they move from step to step. I have been keeping busy by wandering around New Orleans, eating their delicious but fattening food, and trying just to keep good thoughts for Melissa's good health and speedy recovery.
The best news is that her lab tests for her biopsied lymph nodes came back NEGATIVE... which means that Melissa is now CANCER FREE!!!!!!! Good times!
Last I heard, she was in the actual reconstruction phase of her surgery, the blood supply all hooked up to the transplanted tissue. In a couple of hours she will be in recovery and I will be able to go down and see her.
Wow!
Tuesday, May 18, 2010
next steps...
catching up here...
I'm not too good about writing, since it's not something I really like to do (sit in front of a computer screen...) but it's a lot easier to write this once, than 10,000x so Neil is pushing me to do this on this blog.
In my last blog, I wrote that I'd fill you in on reconstruction options. Briefly, there are 2 types: implants and flap procedures. I don't want to have implants (nothing against those who have them or want them) but they aren't for me, for a whole host of reasons (email me personally, if you're interested in knowing the details of that decision). So, I'm opting for a flap procedure, where tissue and fat is taken from one part of your body (tummy or butt/hips), to reconstruct new breasts.
We met with a plastic surgeon in Seattle a couple of weeks ago, and he determined the best place to take tissue and fat from me was from my butt and hip area.
(I must tell you, as a sidenote, that standing completely naked, in front of the doc, who was at about eye level with my chest, and who was using calipers to determine my belly and butt fat amounts, was a little mortifying. He was lifting my breasts, and grabbing at my tissue, looking so serious, as I was about ready to curl up and die from humiliation, particularly since our kids go to school together! oh well... if I didn't have a sense of humor about this before, I sure do now!!)
If you're super interested in an overview of breast reconstruction options, I think Johns Hopkins does a pretty good job of explaining it all:
http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/reconstructive_breast_surgery/index.html
After I decided against implants and for a flap procedure, and determined that the only place that can be used as a donor site for this was my tushie, I had to find a qualified surgeon to perform this type of procedure.
Upward and onward with more research! phew!
I researched this for hours and hours, and found the best place to have this done, in the country (and perhaps, even one of the very best places in the world!), is in New Orleans, at the Center for Restorative Breast Surgery (http://www.breastcenter.com/). Who knew, right? There are a lot of docs who do implant surgery in Seattle, a few who do the flap procedure from your belly fat (I don't have enough there to work with, ironically, since I'm such a big girl) but only 2 surgeons in Seattle who do the butt flap procedure and they only do a few a year. I'm not interested in somebody who may have to pull out the owners manual each time he does this ("Hmmm... let's see... step 1. drape the patient. step 2. make incision here... NOT here... ").
So, with a lot of hard work in the research department, many hours of phone calling all over the country, fighting and finagling with my insurance company, discussing and discussing with Neil, I've opted to go to the place where they're experts!
My surgery is scheduled for next Tuesday, May 25th, at 7am, in New Orleans. Our calender is tight between now and then, with work and kid duty. Fortunately, Quinn is home from college now, so he's a huge help. Sam graduates from college in just 5 days - this Sunday, May 23rd! We then leave, bright and early, the next morning, bound for New Orleans. I have pre-op appointments in New Orleans on Monday afternoon, and surgery, bright and early, Tuesday morning. I have to stay in the hospital for 2-4 days (which I'm counting on as 2, not 3 or 4). Then, stay in a New Orleans hotel, for a few more days, then home on June 2nd! Neil is coming with me, and will stay through the 27th, then Carol will come down and be with me till I come home.
I've been exercising a lot and feel really great right now, so am planning on a speedy recovery and back to work a couple of weeks after surgery. I'm not supposed to lift anything heavier than 10 pounds for 4 weeks, so pray nobody delivers a big baby, or I'll have to ask them to put their own baby on the baby scale at work - ha!
So, that's where we're at now. Again, I am so thankful for all of you and your kind words, deeds, notes, gifts, kisses, hugs, emails. It has truly been the thing that has kept me sane and grounded. My friends and fam have surrounded me with so much love, it's almost unbelievable. I don't feel deserved of it, but will pass it forward, for sure.
Neil and I will keep you posted. He has a list of folks to send a text message to, when the surgery is over, so if you want to be on the list, please send either of us an email. You know how to get ahold of us!
kisses back at'cha!
I'm not too good about writing, since it's not something I really like to do (sit in front of a computer screen...) but it's a lot easier to write this once, than 10,000x so Neil is pushing me to do this on this blog.
In my last blog, I wrote that I'd fill you in on reconstruction options. Briefly, there are 2 types: implants and flap procedures. I don't want to have implants (nothing against those who have them or want them) but they aren't for me, for a whole host of reasons (email me personally, if you're interested in knowing the details of that decision). So, I'm opting for a flap procedure, where tissue and fat is taken from one part of your body (tummy or butt/hips), to reconstruct new breasts.
We met with a plastic surgeon in Seattle a couple of weeks ago, and he determined the best place to take tissue and fat from me was from my butt and hip area.
(I must tell you, as a sidenote, that standing completely naked, in front of the doc, who was at about eye level with my chest, and who was using calipers to determine my belly and butt fat amounts, was a little mortifying. He was lifting my breasts, and grabbing at my tissue, looking so serious, as I was about ready to curl up and die from humiliation, particularly since our kids go to school together! oh well... if I didn't have a sense of humor about this before, I sure do now!!)
If you're super interested in an overview of breast reconstruction options, I think Johns Hopkins does a pretty good job of explaining it all:
http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/reconstructive_breast_surgery/index.html
After I decided against implants and for a flap procedure, and determined that the only place that can be used as a donor site for this was my tushie, I had to find a qualified surgeon to perform this type of procedure.
Upward and onward with more research! phew!
I researched this for hours and hours, and found the best place to have this done, in the country (and perhaps, even one of the very best places in the world!), is in New Orleans, at the Center for Restorative Breast Surgery (http://www.breastcenter.com/). Who knew, right? There are a lot of docs who do implant surgery in Seattle, a few who do the flap procedure from your belly fat (I don't have enough there to work with, ironically, since I'm such a big girl) but only 2 surgeons in Seattle who do the butt flap procedure and they only do a few a year. I'm not interested in somebody who may have to pull out the owners manual each time he does this ("Hmmm... let's see... step 1. drape the patient. step 2. make incision here... NOT here... ").
So, with a lot of hard work in the research department, many hours of phone calling all over the country, fighting and finagling with my insurance company, discussing and discussing with Neil, I've opted to go to the place where they're experts!
My surgery is scheduled for next Tuesday, May 25th, at 7am, in New Orleans. Our calender is tight between now and then, with work and kid duty. Fortunately, Quinn is home from college now, so he's a huge help. Sam graduates from college in just 5 days - this Sunday, May 23rd! We then leave, bright and early, the next morning, bound for New Orleans. I have pre-op appointments in New Orleans on Monday afternoon, and surgery, bright and early, Tuesday morning. I have to stay in the hospital for 2-4 days (which I'm counting on as 2, not 3 or 4). Then, stay in a New Orleans hotel, for a few more days, then home on June 2nd! Neil is coming with me, and will stay through the 27th, then Carol will come down and be with me till I come home.
I've been exercising a lot and feel really great right now, so am planning on a speedy recovery and back to work a couple of weeks after surgery. I'm not supposed to lift anything heavier than 10 pounds for 4 weeks, so pray nobody delivers a big baby, or I'll have to ask them to put their own baby on the baby scale at work - ha!
So, that's where we're at now. Again, I am so thankful for all of you and your kind words, deeds, notes, gifts, kisses, hugs, emails. It has truly been the thing that has kept me sane and grounded. My friends and fam have surrounded me with so much love, it's almost unbelievable. I don't feel deserved of it, but will pass it forward, for sure.
Neil and I will keep you posted. He has a list of folks to send a text message to, when the surgery is over, so if you want to be on the list, please send either of us an email. You know how to get ahold of us!
kisses back at'cha!
Tuesday, May 4, 2010
Hi... from Melissa... finally.
Neil has done a good job summing this up (with the exception of a few typo's and grammatical errors. ha!). I am not much of a writer, not because I don't like to express myself with words - that would be a huge understatement (ask Neil and the kids!). It's just that it's difficult to type as fast as my little brain is talking in my head, but I'll do my best here.
Yes, the initial diagnosis was a huge shock. I must say, I am still a bit in denial. I certainly don't feel like somebody who has the big, scary "C" word. I feel great, run or row a few times a week, eat well, sleep well (er... relatively well for a peri-menopausal woman), etc. How could I have any weird, strange, irregular cells inside of me? It's a mystery. Plus, I am in about as low a risk as possible for getting breast CA. It truly isn't something I've worried about in my life - and that's saying a LOT because I am a huge worrier (again, just ask my kids... Quinn bought me a "panic button" and put it on the fridge, so I could go push it whenever I started worrying about the kids too much!).
But, as they say in life, sh*t happens, and so it has!
I also don't let this define me: I don't have cancer, I have cancerous cells in my breast. Which will be removed and then I won't have to have that big, scary "C" word hanging around my neck anymore. Dr. Susan Love says it well on her website: It is not life threatening. If you have DCIS, it means that you have abnormal cells in the lining of a duct.
You can read more here:
http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=2&L4=3&SID=164
At the beginning, it was really hard to tell anybody. So I had all of my very best breast angels spreading the word for me. I hated the look on peoples faces, those sad puppy-dog eyes, or the "OHMYGOSH!" panic, or the tears. So, I determined it was best to just say nothing. Let word pass from friend to friend, via my best friends. That worked best for me.
It's funny. I have never minded telling people anything: the details of the testing, diagnosis, treatments, my feelings, etc. I am a talker. It's very clinical to me - a process to get through. An annoyingly long process that I don't have time for (who does?!? is it ever 'convenient' to get cancer?!?) . I just don't like telling people first.
Also, I have been reassured from all the reading I've done, and all of the doctors I've seen, that I will live a good long life, and will be rocking my beautiful grandbabies on my front porch when I'm 95 years old! And that's what it's all about!
In terms of diagnosing this, I guess I should back up a bit...
I went in for a routine mammo on Feb. 17th, 2010, and was called back for a 2nd mammo for magnification views of "suspicious calcifications" - normal for somebody in my age category. The radiologist thought it'd be a good idea to biopsy the "suspicious calc's", which was then supposed to rule OUT any breast CA (not rule it IN, for goodness sake! sheesh! I guess the pathologist didn't get that memo!).
I was never scared or worried. I didn't need anybody to accompany me to the biopsy because I felt quite confident that the path reports would all come back negative for breast CA (again, I'm in a very low risk category). I even scheduled to go out for drinks with girlfriends after work, on the day the doc was calling me back with the results. No biggie, I thought - it will be negative and we'll have something to make a toast to.
When the doc (my friend, the radiologist) called to tell me that it came back positive for DCIS, I was shocked! She called me when I was on my way to the restaurant to meet my girlfriends, and her first words were: "Where are you?" "In my car," I replied. She asked "Do you want to pull over?" and, of course, I knew then what she was going to say. I think I replied "SH*T!" or something else as lovely. She was so sorry to have to break the news to me, and she said she was equally surprised, but quickly educated me about how DCIS is the "good cancer" and it is "more of a nuisance" than anything. And, she was right, of course. It's just not the kind of "nuisance" I want to personally have to deal with! But I went off to have a drink with those wonderful, beautiful best breast friends of mine, and they were awesome. How serendipitous that was - to share, for the first time, that scary diagnosis, with caring, loving nurses, who cherish breasts in the most beautiful of ways (we're lactation consultants). They were PERFECT in every way, and we did, indeed, drink well together! I am blessed to have them in my life!
Neil and I immediately started researching. He has been WONDERFUL through this whole thing... so supportive, loving, not freaked out, helping me dig for research/news/ideas/doctors, etc. I couldn't ask for a better husband than him. It's been awesome. I don't know what people do who don't have a loving spouse to help you through something like this. I am truly blessed!!!
I then went in for 2 more biopsies, a breast MRI, an ultrasound and countless more mammograms. My sister, Carol, accompanied me to the next set of biopsies. She really helped. By then, I already had the diagnosis, so we were just looking to see how diffusely spread it was, in helping me determine the best/most appropriate treatment plan. Carol held my hand, and was my steady rock, while I sat there in the clinic, in my stupid green robe, a newly diagnosed cancer patient. ugh...
After those tests were done, it was confirmed that the spread of the disease was, indeed, too diffuse to do anything other than a mastectomy. DCIS is like fine sand spread through the ducts. It can't be 'excised' by a 'lumpectomy'. A surgeon couldn't possibly go in and pick through my ducts to get it all out, while leaving the breast intact. You can't tell, by the naked eye, which are cancerous cells and which are just plain fibrocystic changes that happen with age. So, the gals have got to go! It's all in my right breast. There are some suspicious calcifications in the left breast, too, but they weren't biopsied, so we're not sure what they are.
As you read from one of the previous posts by Neil, right after that, we then went off for a weeks vacation to Hawaii, and it was just what the doctor ordered! It really helped to calm us both down, relax, retreat, and just plain have fun - with the kids, in the waves, in the sun, at the pool, scuba-diving, zip-lining, etc. It was perfect!!!
To re-cap and fast forward to today, this is where we're at...
First was the diagosis: DCIS
Next came the treatment plan: mastectomy.
Then the decision to do bilateral or unilateral mastectomy: This has been a toughie. Do you take both when only one is involved (as far as you know?). Are you a gambler? What are the chances of them finding it on the other side, down the road? This is complicated. I've done a ton of research. I've talked to a lot of people, read a lot of blogs, read a lot of research. It's not clear one way or the other, but for me, I've concluded that the best way to go is to take them both. I've hated all of the appointments, and stabbing and prodding and smushing and needling. I don't want to go through this, plus the worrying, every 6 months, for the rest of my life. I know that some people would disapprove of this decision, but for me, it's the best way to go.
The next big decision is what kind of breast reconstruction? Did you know that insurance companies are federally mandated to pay for breast reconstruction after mastectomy? I didn't know that! I was so happy to hear that, because I thought, "how are we going to pay for 2 new breasts?". So, off we went to the reconstruction docs!
My options are:
1. implants: not for me!
2. flap surgery: they take fat and tissue from another part of your body (either your tummy or your buttocks) and make new breasts! Isn't that cool?!? (and, yes, get a ticket and get in line, in terms of contributions. I have a few 'donors' already lined up!)
So, that's where we're at. I've been doing a lot of research about reconstruction options, and I'm in the fortunate position of not having to rush. I will report more specifically, in the next post, about the different reconstruction options.
In the meantime, know that I am well, and well cared for. There are a ton of blessings in this all: I have the most amazing family (Neil and the kids are awesome. I'll have to post sometime about their initial reactions, but they're all good now), the best siblings and friends in the world, a ton of support and outpouring of love from extended family and friends, and an incredibly supportive work environment. I am also lucky to live in a first-world country, with great health care benefits (that not all people are fortunate to have), and live in an area where this can be taken care of. I am healthy and strong! I am blessed beyond belief!!! Thanks to all of you who've sent notes, called, kissed me, loved me, hugged me. It's been the best thing in the world, to know you care, and I know all of that wonderfully good karma, will help me - and help the world!!!
Gotta run now to go take my girl to the orthodontist (and life goes on!)
Big hugs!
Neil has done a good job summing this up (with the exception of a few typo's and grammatical errors. ha!). I am not much of a writer, not because I don't like to express myself with words - that would be a huge understatement (ask Neil and the kids!). It's just that it's difficult to type as fast as my little brain is talking in my head, but I'll do my best here.
Yes, the initial diagnosis was a huge shock. I must say, I am still a bit in denial. I certainly don't feel like somebody who has the big, scary "C" word. I feel great, run or row a few times a week, eat well, sleep well (er... relatively well for a peri-menopausal woman), etc. How could I have any weird, strange, irregular cells inside of me? It's a mystery. Plus, I am in about as low a risk as possible for getting breast CA. It truly isn't something I've worried about in my life - and that's saying a LOT because I am a huge worrier (again, just ask my kids... Quinn bought me a "panic button" and put it on the fridge, so I could go push it whenever I started worrying about the kids too much!).
But, as they say in life, sh*t happens, and so it has!
I also don't let this define me: I don't have cancer, I have cancerous cells in my breast. Which will be removed and then I won't have to have that big, scary "C" word hanging around my neck anymore. Dr. Susan Love says it well on her website: It is not life threatening. If you have DCIS, it means that you have abnormal cells in the lining of a duct.
You can read more here:
http://www.dslrf.org/breastcancer/content.asp?L2=3&L3=2&L4=3&SID=164
At the beginning, it was really hard to tell anybody. So I had all of my very best breast angels spreading the word for me. I hated the look on peoples faces, those sad puppy-dog eyes, or the "OHMYGOSH!" panic, or the tears. So, I determined it was best to just say nothing. Let word pass from friend to friend, via my best friends. That worked best for me.
It's funny. I have never minded telling people anything: the details of the testing, diagnosis, treatments, my feelings, etc. I am a talker. It's very clinical to me - a process to get through. An annoyingly long process that I don't have time for (who does?!? is it ever 'convenient' to get cancer?!?) . I just don't like telling people first.
Also, I have been reassured from all the reading I've done, and all of the doctors I've seen, that I will live a good long life, and will be rocking my beautiful grandbabies on my front porch when I'm 95 years old! And that's what it's all about!
In terms of diagnosing this, I guess I should back up a bit...
I went in for a routine mammo on Feb. 17th, 2010, and was called back for a 2nd mammo for magnification views of "suspicious calcifications" - normal for somebody in my age category. The radiologist thought it'd be a good idea to biopsy the "suspicious calc's", which was then supposed to rule OUT any breast CA (not rule it IN, for goodness sake! sheesh! I guess the pathologist didn't get that memo!).
I was never scared or worried. I didn't need anybody to accompany me to the biopsy because I felt quite confident that the path reports would all come back negative for breast CA (again, I'm in a very low risk category). I even scheduled to go out for drinks with girlfriends after work, on the day the doc was calling me back with the results. No biggie, I thought - it will be negative and we'll have something to make a toast to.
When the doc (my friend, the radiologist) called to tell me that it came back positive for DCIS, I was shocked! She called me when I was on my way to the restaurant to meet my girlfriends, and her first words were: "Where are you?" "In my car," I replied. She asked "Do you want to pull over?" and, of course, I knew then what she was going to say. I think I replied "SH*T!" or something else as lovely. She was so sorry to have to break the news to me, and she said she was equally surprised, but quickly educated me about how DCIS is the "good cancer" and it is "more of a nuisance" than anything. And, she was right, of course. It's just not the kind of "nuisance" I want to personally have to deal with! But I went off to have a drink with those wonderful, beautiful best breast friends of mine, and they were awesome. How serendipitous that was - to share, for the first time, that scary diagnosis, with caring, loving nurses, who cherish breasts in the most beautiful of ways (we're lactation consultants). They were PERFECT in every way, and we did, indeed, drink well together! I am blessed to have them in my life!
Neil and I immediately started researching. He has been WONDERFUL through this whole thing... so supportive, loving, not freaked out, helping me dig for research/news/ideas/doctors, etc. I couldn't ask for a better husband than him. It's been awesome. I don't know what people do who don't have a loving spouse to help you through something like this. I am truly blessed!!!
I then went in for 2 more biopsies, a breast MRI, an ultrasound and countless more mammograms. My sister, Carol, accompanied me to the next set of biopsies. She really helped. By then, I already had the diagnosis, so we were just looking to see how diffusely spread it was, in helping me determine the best/most appropriate treatment plan. Carol held my hand, and was my steady rock, while I sat there in the clinic, in my stupid green robe, a newly diagnosed cancer patient. ugh...
After those tests were done, it was confirmed that the spread of the disease was, indeed, too diffuse to do anything other than a mastectomy. DCIS is like fine sand spread through the ducts. It can't be 'excised' by a 'lumpectomy'. A surgeon couldn't possibly go in and pick through my ducts to get it all out, while leaving the breast intact. You can't tell, by the naked eye, which are cancerous cells and which are just plain fibrocystic changes that happen with age. So, the gals have got to go! It's all in my right breast. There are some suspicious calcifications in the left breast, too, but they weren't biopsied, so we're not sure what they are.
As you read from one of the previous posts by Neil, right after that, we then went off for a weeks vacation to Hawaii, and it was just what the doctor ordered! It really helped to calm us both down, relax, retreat, and just plain have fun - with the kids, in the waves, in the sun, at the pool, scuba-diving, zip-lining, etc. It was perfect!!!
To re-cap and fast forward to today, this is where we're at...
First was the diagosis: DCIS
Next came the treatment plan: mastectomy.
Then the decision to do bilateral or unilateral mastectomy: This has been a toughie. Do you take both when only one is involved (as far as you know?). Are you a gambler? What are the chances of them finding it on the other side, down the road? This is complicated. I've done a ton of research. I've talked to a lot of people, read a lot of blogs, read a lot of research. It's not clear one way or the other, but for me, I've concluded that the best way to go is to take them both. I've hated all of the appointments, and stabbing and prodding and smushing and needling. I don't want to go through this, plus the worrying, every 6 months, for the rest of my life. I know that some people would disapprove of this decision, but for me, it's the best way to go.
The next big decision is what kind of breast reconstruction? Did you know that insurance companies are federally mandated to pay for breast reconstruction after mastectomy? I didn't know that! I was so happy to hear that, because I thought, "how are we going to pay for 2 new breasts?". So, off we went to the reconstruction docs!
My options are:
1. implants: not for me!
2. flap surgery: they take fat and tissue from another part of your body (either your tummy or your buttocks) and make new breasts! Isn't that cool?!? (and, yes, get a ticket and get in line, in terms of contributions. I have a few 'donors' already lined up!)
So, that's where we're at. I've been doing a lot of research about reconstruction options, and I'm in the fortunate position of not having to rush. I will report more specifically, in the next post, about the different reconstruction options.
In the meantime, know that I am well, and well cared for. There are a ton of blessings in this all: I have the most amazing family (Neil and the kids are awesome. I'll have to post sometime about their initial reactions, but they're all good now), the best siblings and friends in the world, a ton of support and outpouring of love from extended family and friends, and an incredibly supportive work environment. I am also lucky to live in a first-world country, with great health care benefits (that not all people are fortunate to have), and live in an area where this can be taken care of. I am healthy and strong! I am blessed beyond belief!!! Thanks to all of you who've sent notes, called, kissed me, loved me, hugged me. It's been the best thing in the world, to know you care, and I know all of that wonderfully good karma, will help me - and help the world!!!
Gotta run now to go take my girl to the orthodontist (and life goes on!)
Big hugs!
Sunday, April 25, 2010
Big Decisions
This past week was a real ratcheting up of the emotional intensity in dealing with this interloper into our lives. We met with two surgeons who helped us first understand the decisions Melissa needs to make on one level and who gave us a lot to do to help her make the decisions about the nature of the surgeries in her future. With the second surgeon, we scheduled the first step in the surgical journey. The mastectomy. Man, there is a lot to think about with respect to reconstruction. How does one go about choosing a surgeon? We have looked over so many websites and we have had to deal with the fact that the procedure that Melissa most likely needs to have is not offered at her hospital, and that we might have to go away (as far away as New Orleans) to get the preferred procedure at a facility devoted to breast cancer treatment.
Needless to say, we are almost overwhelmed by the information we need to process to make a good series of decisions...So far, we know this...Melissa is scheduled for the first of several surgeries at the moment on May 26th here in town.
Next up visits with many plastic surgeons so that we can learn about the options Melissa has with respect to breast construction.
Needless to say, we are almost overwhelmed by the information we need to process to make a good series of decisions...So far, we know this...Melissa is scheduled for the first of several surgeries at the moment on May 26th here in town.
Next up visits with many plastic surgeons so that we can learn about the options Melissa has with respect to breast construction.
Wednesday, April 21, 2010
To the Surgeons
This week, starting today, we begin interviewing surgeons. Our approach is to talk to first the surgeon who is highly recommended but not on Missy's plan to get answers to questions and to learn more about what they are thinking about before going on to talk to the surgeon we have selected to do the procedure. We want to meet with the surgeon who will do the surgery with our eyes wide open. Its a big day today because this step shifts the focus from investigation to action.
Once we have met both surgeons, we will set a surgery date and and move on. With each cycle of action, we get closet to the day that Melissa is free of cancer.
Once we have met both surgeons, we will set a surgery date and and move on. With each cycle of action, we get closet to the day that Melissa is free of cancer.
Saturday, April 17, 2010
Getting the news
We learned about Melissa's diagnosis after she had a biopsy following a DIGITAL mammogram. The doc spoke the words "Ductal Carcinoma In Situ" (DCIS)- of course what you hear is "You have cancer!" But after the first moments of shock, we started our research. Luckily a friend had done a lot of research since his wife also has DCIS, and that gave us a glimpse into the subject. But the Mammo was followed up with a contrast MRI and a second round of biopsies, and it was made clear to us that this slow growing form of cancer has been around for a while.
The best thing we did was go to Hawaii for a week where, armed with yet more research from a Breast Cancer Center in Missouri, we were able to form a scientifically validated opinion about the situation, frame our questions and generally come to the place where we realized that "Melissa" doesn't have cancer, her breast tissue has some cancer cells in the plumbing between the milk glands and the nipple. And that we are going to beat this. Period.
Luckily, DCIS is slow growing, non-invasive and not very aggressive form. But 30% of DCIS goes on to become invasive cancer, only we are not certain as to which 30%, so we need to act. Our doc believes that in Melissa's case, hers is more likely to progress to invasive cancer if left alone, which further prompts us to action.
Action on the calendar includes visits with breast surgeons, and genetic testing. We have some work to do to make final decisions, but the way things look, in this situation, Melissa is facing a mastectomy to ensure that she rids her body of DCIS, and along with the Mastectomy of course, she will have breast reconstruction. The big question on our minds this week is this: Should she have a bilateral or a unilateral procedure? We will ponder this and get input from the surgeons, but we are leaning this way because she is going to have to have surgery on her left breast as well during the reconstruction phase, and because the risk of invasive cancer in the uninvolved breast is increased when DCIS is present in the the other. Our view is why risk it, an ounce of prevention could be worth a pound of cure. One advantage of a Mastectomy as an approach is that Melissa will not need chemo or radiation as long as the margin (space between the tumor and the chest wall) in surgery is as it is on the MRI.
Thats where we are as of today.
The best thing we did was go to Hawaii for a week where, armed with yet more research from a Breast Cancer Center in Missouri, we were able to form a scientifically validated opinion about the situation, frame our questions and generally come to the place where we realized that "Melissa" doesn't have cancer, her breast tissue has some cancer cells in the plumbing between the milk glands and the nipple. And that we are going to beat this. Period.
Luckily, DCIS is slow growing, non-invasive and not very aggressive form. But 30% of DCIS goes on to become invasive cancer, only we are not certain as to which 30%, so we need to act. Our doc believes that in Melissa's case, hers is more likely to progress to invasive cancer if left alone, which further prompts us to action.
Action on the calendar includes visits with breast surgeons, and genetic testing. We have some work to do to make final decisions, but the way things look, in this situation, Melissa is facing a mastectomy to ensure that she rids her body of DCIS, and along with the Mastectomy of course, she will have breast reconstruction. The big question on our minds this week is this: Should she have a bilateral or a unilateral procedure? We will ponder this and get input from the surgeons, but we are leaning this way because she is going to have to have surgery on her left breast as well during the reconstruction phase, and because the risk of invasive cancer in the uninvolved breast is increased when DCIS is present in the the other. Our view is why risk it, an ounce of prevention could be worth a pound of cure. One advantage of a Mastectomy as an approach is that Melissa will not need chemo or radiation as long as the margin (space between the tumor and the chest wall) in surgery is as it is on the MRI.
Thats where we are as of today.
Getting Started
So this could be a pretty hard blog to write, but perhaps doing so will be a good thing. We think that this way, it will be easier to keep our friends and family informed as to Melissa's progress. Sometimes I will post and at others, Melis' will. We encourage those who wish to follow along with Melissa's progress to subscribe to the blog. I can say that we really appreciate the words of support that everybody has offered. Thank you.
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