I've been doing the TMZ/ABT-88 phase 2 trial for two months now, and according to the protocol I am due for a scan after every 2 cycles. Today I went to Dana Farber to get the results of a CT scan that I went for on Friday.
My doctor was very happy to report that the CT scan showed a reduction of approximately 30%. Now, I'm not used to 30%. I always got A's in school, but I guess this is a good result. What's more, the CT can't tell the difference between necrotic tissue and tumor, so it could be even better than that (there could be a lot of dead tissue that is not tumor but still looks like tumor on the scan). She also said that my first scan showed one of the major blood vessels in my liver as being compressed by a tumor. That blood vessel is back to normal and is doing much better. The scan also showed clear lungs and intestines and all that good stuff.
So, it looks like the trial is working. I've been having trouble with a low platelet count, so my treatment is delayed for another week (this is the second time that's happened). While that sucks, it's just a week and it's not the end of the world.
There's something sad about this time, though. On Sunday, November 28 (yesterday), I have an appointment on my calendar and it says "NED". This marks the day that I ended treatment 2 years ago, which is called the NED date, or "No Evidence of Disease". It's kind of sad that I didn't even make it 2 years.
I'm sorry that it's taken me so long to post. I have a relatively new hobby. If it comes down to blogging or knitting, I'll choose knitting almost every time. Soon I'll post a picture of my Waiting Room Socks. I'm making good progress, but there's not as much waiting as I expected!
Monday, November 29, 2010
Wednesday, September 29, 2010
Dana Farber, Part II
On Monday I went back to Dana Farber to get the meds for my trial. It's pretty complicated. I take the PARP drug 2 times a day for 7 days, and I take the chemo drug once per day for 5 days. Because the dose for chemo is so exact, I have to take 7 pills of the chemo alone just to get the right dose! I have a boatload of anti-nausea meds that I can take, and some pain medication because my chest has been hurting more (especially while taking deep breaths).
My doctor began our conversation by telling me that the diagnostic CT scan I took a week ago showed that the tumor was bigger than we originally thought from the first CT scan (which was about 6 weeks ago). The original scan was not as clear as this one, so the discrepancy could be partly due to differences in imaging. It's also pretty likely that it has grown in the last six weeks. My doctor still felt comfortable with this course of treatment, but she asked that I let her know if I don't feel a difference within a week. In that case, we won't wait 2 months to do another scan. I'm really happy that she suggested it and I didn't even have to ask. She also told me not to be shy about letting them know if I'm having trouble or if I'm in worse pain. Not that I would be shy, but it's great to hear them say that. It really feels like they're partnering with me. I like her a lot and so far I'm happy with this change.
Yesterday was my first actual day of treatment. My doctor suggested I not go to work yesterday because I wasn't really sure how I was going to feel. I listened. It began at 6:30 AM, when I took an anti-nausea pill, part of the Emend set of pills. You might remember this from the first time I did chemo (I sure did). I was supposed to have this to start treatment, but I didn't have the prescription. I felt pretty sick that first week. By my second treatment, I had the Emend, and I wrote this post. Anyway, I started the Emend at 6:30 AM, then a half hour later at 7 AM I took the chemo drug and the PARP drug. I have to wait an hour before eating.
Later that morning, I felt kind of light-headed and woozy, but not really sick. In hindsight, I think that was the Emend (the first dose in the set is higher than the rest and this AM I didn't have the woozy feeling). I went out and got some soup for lunch and then at around 2:30 I started to feel pretty ookey and I had to take a nap. I had that nauseating feeling until around dinner time. I had a good dinner and started feeling better. At 7 PM I took the next dose of the PARP drug, which doesn't give me any noticeable side-effects as far as I can tell.
I woke up this morning and did it all over again. I didn't go to work because I wanted to get another day to figure out the timing of my symptoms - I didn't want to be stuck at work feeling sick. Today was definitely better. The lower dose of Emend is good - I didn't get the light-headed feeling. I didn't feel sick around 2:30, either. I lasted until 4:30, when I got really tired and took a nap. When I woke up, I did feel a little ookey, but nowhere near as bad as I felt yesterday.
So, I think I determined an interesting thing about anti-nausea meds. They are no bargain. The side effects of all of them are dizziness and headaches. Which would you rather have? I'm not sure! I definitely felt the difference with the lower dose today. I think I know what's up with the nausea, too. It's not part of the study, but I took some pain medication yesterday around noontime, and nausea is one of the side effects. I didn't take one today and I felt a lot better. So, I think that mystery is solved, too.
Anyway, I know that's kind of boring but I don't really know what else to say about the treatments. I suspect days 3-5 will be a lot like today and hopefully 6 and 7 will be even better because there is no chemo. I do one week on treatment, then 3 weeks off. As long as my bloodwork comes back okay, I start another course. One of the problems that these drugs cause is a drop in platelets, so they'll be looking for that when I get my blood drawn.
And, I think that's about it for now. My appointment was much more efficient on Monday, so I didn't get to make a lot of progress on my "Waiting Socks." The progress was so immeasurable that I forgot to take a picture. :-( These socks are going to take forever! Maybe that's a good thing.
My doctor began our conversation by telling me that the diagnostic CT scan I took a week ago showed that the tumor was bigger than we originally thought from the first CT scan (which was about 6 weeks ago). The original scan was not as clear as this one, so the discrepancy could be partly due to differences in imaging. It's also pretty likely that it has grown in the last six weeks. My doctor still felt comfortable with this course of treatment, but she asked that I let her know if I don't feel a difference within a week. In that case, we won't wait 2 months to do another scan. I'm really happy that she suggested it and I didn't even have to ask. She also told me not to be shy about letting them know if I'm having trouble or if I'm in worse pain. Not that I would be shy, but it's great to hear them say that. It really feels like they're partnering with me. I like her a lot and so far I'm happy with this change.
Yesterday was my first actual day of treatment. My doctor suggested I not go to work yesterday because I wasn't really sure how I was going to feel. I listened. It began at 6:30 AM, when I took an anti-nausea pill, part of the Emend set of pills. You might remember this from the first time I did chemo (I sure did). I was supposed to have this to start treatment, but I didn't have the prescription. I felt pretty sick that first week. By my second treatment, I had the Emend, and I wrote this post. Anyway, I started the Emend at 6:30 AM, then a half hour later at 7 AM I took the chemo drug and the PARP drug. I have to wait an hour before eating.
Later that morning, I felt kind of light-headed and woozy, but not really sick. In hindsight, I think that was the Emend (the first dose in the set is higher than the rest and this AM I didn't have the woozy feeling). I went out and got some soup for lunch and then at around 2:30 I started to feel pretty ookey and I had to take a nap. I had that nauseating feeling until around dinner time. I had a good dinner and started feeling better. At 7 PM I took the next dose of the PARP drug, which doesn't give me any noticeable side-effects as far as I can tell.
I woke up this morning and did it all over again. I didn't go to work because I wanted to get another day to figure out the timing of my symptoms - I didn't want to be stuck at work feeling sick. Today was definitely better. The lower dose of Emend is good - I didn't get the light-headed feeling. I didn't feel sick around 2:30, either. I lasted until 4:30, when I got really tired and took a nap. When I woke up, I did feel a little ookey, but nowhere near as bad as I felt yesterday.
So, I think I determined an interesting thing about anti-nausea meds. They are no bargain. The side effects of all of them are dizziness and headaches. Which would you rather have? I'm not sure! I definitely felt the difference with the lower dose today. I think I know what's up with the nausea, too. It's not part of the study, but I took some pain medication yesterday around noontime, and nausea is one of the side effects. I didn't take one today and I felt a lot better. So, I think that mystery is solved, too.
Anyway, I know that's kind of boring but I don't really know what else to say about the treatments. I suspect days 3-5 will be a lot like today and hopefully 6 and 7 will be even better because there is no chemo. I do one week on treatment, then 3 weeks off. As long as my bloodwork comes back okay, I start another course. One of the problems that these drugs cause is a drop in platelets, so they'll be looking for that when I get my blood drawn.
And, I think that's about it for now. My appointment was much more efficient on Monday, so I didn't get to make a lot of progress on my "Waiting Socks." The progress was so immeasurable that I forgot to take a picture. :-( These socks are going to take forever! Maybe that's a good thing.
Monday, September 20, 2010
Dana Farber
Today I met with a doctor at Dana Farber to review my case and discuss medical trials that would be appropriate for my situation.
A lot happened, but I'll try to summarize. We met with an awesome woman who sounded pretty encouraged about a number of opportunities. One in particular has shown promise for women with the BRCA mutation, and I plan to participate in it. This link describes the study:
http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01009788
Here's the logic behind the trial:
The BRCA mutation contributes to a cell's inability to inhibit tumor growth, which is why BRCA mutation carriers are so much more likely to get cancer. The study combines two drugs - a chemotherapy drug (Temozolomide) with a PARP inhibitor (ABT-888). [PARP stands for poly (ADP-ribose) polymerase.] The chemotherapy drug destroys a cell's DNA. The PARP inhibitor prevents the cell from repairing the damage. The idea is that the cell won't be able to repair the damage, and then it will die. Since BRCA mutation carriers already have trouble repairing cell damage, this population seems much more likely to benefit from this treatment. In fact, earlier on in the trial, BRCA mutation carriers and non-carriers were allowed to participate but only BRCA mutation carriers responded to the treatment. Some did very well, and one patient experienced a complete disappearance of her tumor.
The study had room for one more participant, so I decided to sign the release and join the study. I had a baseline CT scan today and I expect to start treatment on Monday. While I wish it were sooner, it's not too far away and I'm pretty excited about it.
I'm sad to be leaving my existing oncologist, but I think this is a really good opportunity for me.
At this point, we still don't know much about my individual prognosis. The idea is that we have to see how well I respond to treatments. Hopefully the treatments will stop the growth of the tumor or even shrink it. I will take a course of treatment until it stops working and then I move on to the next treatment. This is what the rest of my life will be like, but my new oncologist sounded hopeful that it could last a long time. For this particular study, I'll take the chemotherapy drug and the PARP inhibitor orally for a week, and then I'll have three weeks off. After two cycles of this, I'll get another CT scan to see if the tumor has responded.
While it's kind of scary to be veering off the standard course of treatment and seeing a new doctor, it feels to me that the standard course of treatment is probably not going to be sufficient. A week ago I was devastated and now I'm thinking differently and I'm hopeful that this will make a difference.
Oh, and I decided that I'm going to do things a little differently this time. I want to talk about something in addition to cancer and treatments. For the past year or so I've been knitting (thanks to Jocelyn). I'll put some of my projects here. One thing I'm working on is my "waiting socks". I started them today when I was in the waiting room at Dana Farber. I waited an entire toe on two socks! Actually, it was longer than that. I waited two toes, then I made a mistake and restarted them both. So it was pretty much four toes. But, although I had to wait a long time, it was definitely worth it. My new oncologist spent TONS of time with me and I'm really happy with her. Anyway, here is my progress on the new socks...
A lot happened, but I'll try to summarize. We met with an awesome woman who sounded pretty encouraged about a number of opportunities. One in particular has shown promise for women with the BRCA mutation, and I plan to participate in it. This link describes the study:
http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01009788
Here's the logic behind the trial:
The BRCA mutation contributes to a cell's inability to inhibit tumor growth, which is why BRCA mutation carriers are so much more likely to get cancer. The study combines two drugs - a chemotherapy drug (Temozolomide) with a PARP inhibitor (ABT-888). [PARP stands for poly (ADP-ribose) polymerase.] The chemotherapy drug destroys a cell's DNA. The PARP inhibitor prevents the cell from repairing the damage. The idea is that the cell won't be able to repair the damage, and then it will die. Since BRCA mutation carriers already have trouble repairing cell damage, this population seems much more likely to benefit from this treatment. In fact, earlier on in the trial, BRCA mutation carriers and non-carriers were allowed to participate but only BRCA mutation carriers responded to the treatment. Some did very well, and one patient experienced a complete disappearance of her tumor.
The study had room for one more participant, so I decided to sign the release and join the study. I had a baseline CT scan today and I expect to start treatment on Monday. While I wish it were sooner, it's not too far away and I'm pretty excited about it.
I'm sad to be leaving my existing oncologist, but I think this is a really good opportunity for me.
At this point, we still don't know much about my individual prognosis. The idea is that we have to see how well I respond to treatments. Hopefully the treatments will stop the growth of the tumor or even shrink it. I will take a course of treatment until it stops working and then I move on to the next treatment. This is what the rest of my life will be like, but my new oncologist sounded hopeful that it could last a long time. For this particular study, I'll take the chemotherapy drug and the PARP inhibitor orally for a week, and then I'll have three weeks off. After two cycles of this, I'll get another CT scan to see if the tumor has responded.
While it's kind of scary to be veering off the standard course of treatment and seeing a new doctor, it feels to me that the standard course of treatment is probably not going to be sufficient. A week ago I was devastated and now I'm thinking differently and I'm hopeful that this will make a difference.
Oh, and I decided that I'm going to do things a little differently this time. I want to talk about something in addition to cancer and treatments. For the past year or so I've been knitting (thanks to Jocelyn). I'll put some of my projects here. One thing I'm working on is my "waiting socks". I started them today when I was in the waiting room at Dana Farber. I waited an entire toe on two socks! Actually, it was longer than that. I waited two toes, then I made a mistake and restarted them both. So it was pretty much four toes. But, although I had to wait a long time, it was definitely worth it. My new oncologist spent TONS of time with me and I'm really happy with her. Anyway, here is my progress on the new socks...
This Ain't My First Rodeo
Note: I originally wrote this post on Tuesday, September 7th, but I didn't want to publish it until I had more information to share.
------------------------------------
Mets. Yes, mets.
About 6-8 weeks ago I started feeling a strange sensation when I breathed deeply. Not all the time, but if my body was bent in the right spot, it kinda felt like something was bubbling up over my ribs. My doctor always asks me about new symptoms at my 3 month checkup, but he's told me that I should call him if I have something new that lasts longer than 4 weeks. At the 4-week mark I wasn't due to see him for another 6-8 weeks, so I called and made an appointment.
He was on vacation, so I saw his nurse practitioner. After we discussed my symptoms and she examined me, she eased my concerns and told me that it likely wasn't related to my cancer, but she wanted to be on the safe side and ordered a chest X-ray and a CT scan. This all happened a couple of weeks ago. When my doctor came back from vacation we met to go over the results. My rib seemed fine but there were some lesions on my liver that concerned him. The only way to be sure was to have an ultrasound guided biopsy of the liver lesion. In hindsight, he wasn't very forthcoming about what was going on - he never really said he was concerned this could be a recurrence but I think he expected us to know that. He wanted to show us the CT scan but couldn't bring it up on his computer. If I had seen it, I might have been more concerned.
I did the liver biopsy about a week and a half ago, and got the results Tuesday, the 7th. It is cancer. The tumor is approximately 2.5 cm x 4 cm. He discussed the standard care protocol for this kind of metastasis. It involves an oral chemotherapy drug called Capecitabine. I won't lose my hair, and it should be much gentler than the chemo I've had. I would take it for 14 days, then get a scan to see if it helped.
However, there is another option. I could participate in a study or get some experimental treatments. My oncologist doesn't have anything that fits my situation, but he's going to talk to someone at Dana Farber to see if they have anything. I'm still waiting to hear back from them but I'd like to at least hear about what's available.
It really helped me to write about my thoughts and happenings the last time, and I intend to use the same outlet this time. Things will have a different feel, though. I apologize if you are hearing about this for the first time. It has been a little bit exhausting and I didn't really have it in me to personally call every one.
------------------------------------
Mets. Yes, mets.
About 6-8 weeks ago I started feeling a strange sensation when I breathed deeply. Not all the time, but if my body was bent in the right spot, it kinda felt like something was bubbling up over my ribs. My doctor always asks me about new symptoms at my 3 month checkup, but he's told me that I should call him if I have something new that lasts longer than 4 weeks. At the 4-week mark I wasn't due to see him for another 6-8 weeks, so I called and made an appointment.
He was on vacation, so I saw his nurse practitioner. After we discussed my symptoms and she examined me, she eased my concerns and told me that it likely wasn't related to my cancer, but she wanted to be on the safe side and ordered a chest X-ray and a CT scan. This all happened a couple of weeks ago. When my doctor came back from vacation we met to go over the results. My rib seemed fine but there were some lesions on my liver that concerned him. The only way to be sure was to have an ultrasound guided biopsy of the liver lesion. In hindsight, he wasn't very forthcoming about what was going on - he never really said he was concerned this could be a recurrence but I think he expected us to know that. He wanted to show us the CT scan but couldn't bring it up on his computer. If I had seen it, I might have been more concerned.
I did the liver biopsy about a week and a half ago, and got the results Tuesday, the 7th. It is cancer. The tumor is approximately 2.5 cm x 4 cm. He discussed the standard care protocol for this kind of metastasis. It involves an oral chemotherapy drug called Capecitabine. I won't lose my hair, and it should be much gentler than the chemo I've had. I would take it for 14 days, then get a scan to see if it helped.
However, there is another option. I could participate in a study or get some experimental treatments. My oncologist doesn't have anything that fits my situation, but he's going to talk to someone at Dana Farber to see if they have anything. I'm still waiting to hear back from them but I'd like to at least hear about what's available.
It really helped me to write about my thoughts and happenings the last time, and I intend to use the same outlet this time. Things will have a different feel, though. I apologize if you are hearing about this for the first time. It has been a little bit exhausting and I didn't really have it in me to personally call every one.
Wednesday, June 2, 2010
Graduate
Today I had my annual checkup with my oncological surgeon. I was going to refer to him by his nickname, but I went back and read my previous blogs and I realized I never gave him one! Anyway, I had my annual checkup with he who has no nickname today.
I've come to view these things as more of a nuisance than anything else. Don't get me wrong - it wasn't always that way. Until very recently, I couldn't go a day without thinking about cancer. And maybe these days I still can't go an entire day, but I really couldn't tell you.
Every day I get dressed and I look at my chest. Instead of looking at two disfigured, mutant lumps with scars across them, I see two shapely, sag-free breasts with nipples. I even think the redness of radiation has lightened up a lot over the last few months, and that surprises me (I thought it would be that way forever). There is no doubt in my mind that the quality of my skin and flesh after reconstruction has totally contributed to my emotional well-being after this whole ordeal.
Anyway, when I talked to my boss about how I'd be working from home today due to an appointment, I said "I've come to view cancer as a way for my doctors to collect a fee once a year from my insurance company for the next five years." And that's mostly true. Except for the hot flashes. Damn the hot flashes. I will always blame those on cancer...
My appointment today started uneventfully. They asked the standard questions, took the standard measurements, and then my surgeon did an exam. He didn't really even remember who I was at the beginning of the appointment. That was a little off-putting. I mean, who wouldn't remember me?! Also, during my appointment he was paged for a surgery that he had right after my exam. He seemed annoyed about the page and told them he'd be there soon.
During the exam, he mentioned that the left side seemed bigger than the other side and not as soft. He thought I should tell my plastic surgeon about it. Honestly, that's the first time anyone has said anything negative about the reconstruction and it kind of pissed me off. The tissue is radiated! My plastic surgeon can't work miracles! I've heard surgeons describe radiated tissue as "beef jerky". All things considered, I'm really happy with the left side, it doesn't feel like jerky, and I feel my oncological surgeon was being sour grapes because he was in a bad mood that he had been paged regarding the surgery - it turns out it was a surgery with my plastic surgeon.
"He's a perfectionist," he said.
Yeah, I know. So why is it again that you think my left boob isn't perfect?!
After all that, at the end of the appointment, he proclaimed, "Well, I'm done."
"Do you mean for today, or forever?" I said.
"Well, there's no need for me to see you any more," he said. "If you find any lumps,..." and I didn't really pay much attention to what he said after that. That sort of put all the annoyance, off-putting, and pissed-offedness in perspective. I'm done. I was kind of amazed to find out that I don't have to go through this crap once every year for the next 3 years with my surgeon. It's refreshing! I kind of feel like I get that one little slice of my life back - I've graduated.
I'm being well cared-for, no doubt. I see my oncologist every 3 months. And I like that. He remembers my name, he knows I like the Red Sox and he knows I'm a software engineer. He asks how my mom is doing, and he tells Rusty that he's happy to see him there. He tailors my treatment plan to my age, my type of cancer, my level of risk, and he knows I friggin' hate hot flashes. He spends 15-20 minutes with me every time I see him and makes me feel good. And most of all, he thinks my breasts look amazing. BOTH of them.
I've come to view these things as more of a nuisance than anything else. Don't get me wrong - it wasn't always that way. Until very recently, I couldn't go a day without thinking about cancer. And maybe these days I still can't go an entire day, but I really couldn't tell you.
Every day I get dressed and I look at my chest. Instead of looking at two disfigured, mutant lumps with scars across them, I see two shapely, sag-free breasts with nipples. I even think the redness of radiation has lightened up a lot over the last few months, and that surprises me (I thought it would be that way forever). There is no doubt in my mind that the quality of my skin and flesh after reconstruction has totally contributed to my emotional well-being after this whole ordeal.
Anyway, when I talked to my boss about how I'd be working from home today due to an appointment, I said "I've come to view cancer as a way for my doctors to collect a fee once a year from my insurance company for the next five years." And that's mostly true. Except for the hot flashes. Damn the hot flashes. I will always blame those on cancer...
My appointment today started uneventfully. They asked the standard questions, took the standard measurements, and then my surgeon did an exam. He didn't really even remember who I was at the beginning of the appointment. That was a little off-putting. I mean, who wouldn't remember me?! Also, during my appointment he was paged for a surgery that he had right after my exam. He seemed annoyed about the page and told them he'd be there soon.
During the exam, he mentioned that the left side seemed bigger than the other side and not as soft. He thought I should tell my plastic surgeon about it. Honestly, that's the first time anyone has said anything negative about the reconstruction and it kind of pissed me off. The tissue is radiated! My plastic surgeon can't work miracles! I've heard surgeons describe radiated tissue as "beef jerky". All things considered, I'm really happy with the left side, it doesn't feel like jerky, and I feel my oncological surgeon was being sour grapes because he was in a bad mood that he had been paged regarding the surgery - it turns out it was a surgery with my plastic surgeon.
"He's a perfectionist," he said.
Yeah, I know. So why is it again that you think my left boob isn't perfect?!
After all that, at the end of the appointment, he proclaimed, "Well, I'm done."
"Do you mean for today, or forever?" I said.
"Well, there's no need for me to see you any more," he said. "If you find any lumps,..." and I didn't really pay much attention to what he said after that. That sort of put all the annoyance, off-putting, and pissed-offedness in perspective. I'm done. I was kind of amazed to find out that I don't have to go through this crap once every year for the next 3 years with my surgeon. It's refreshing! I kind of feel like I get that one little slice of my life back - I've graduated.
I'm being well cared-for, no doubt. I see my oncologist every 3 months. And I like that. He remembers my name, he knows I like the Red Sox and he knows I'm a software engineer. He asks how my mom is doing, and he tells Rusty that he's happy to see him there. He tailors my treatment plan to my age, my type of cancer, my level of risk, and he knows I friggin' hate hot flashes. He spends 15-20 minutes with me every time I see him and makes me feel good. And most of all, he thinks my breasts look amazing. BOTH of them.
Friday, April 9, 2010
Anniversary
Today is an anniversary. It's the 2 year anniversary of my diagnosis. I'll never forget that day. It was early in the morning when my doctor's office called me and told me they wanted to have me come in to discuss the results of my biopsy. It scared the hell out of me, but while I waited until it was time to leave for my appointment I did a lot of googling and convinced myself that I couldn't possibly have cancer - the statistics were on my side!
Two years later, after 3 surgeries, months of chemo, and weeks of radiation, it almost seems like it never happened. That is, until today. I'm having a bad boob day. I rushed out of the house this morning and didn't notice (until I got to work, of course) that the combination of my bra and my shirt and my boobs looks awful! I have to wear padded bras because my nipples would always show otherwise. But a padded bra has a lot of structure to it and the shape of my breasts doesn't completely fill out the bra, so there's a void that kind of gets crushed. If I wear the wrong shirt, you can totally see where the part of my bra is a little distorted. I tried taking my bra off, but now I can see my nipples. It's kind of funny, but a little annoying. I have learned my lesson about looking in a full-length mirror before leaving the house for the day.
I also have another important anniversary coming up. On Monday it is my and Rusty's fifth wedding anniversary. I couldn't have asked for a better partner in life, and I look forward to many more years with my love.
Two years later, after 3 surgeries, months of chemo, and weeks of radiation, it almost seems like it never happened. That is, until today. I'm having a bad boob day. I rushed out of the house this morning and didn't notice (until I got to work, of course) that the combination of my bra and my shirt and my boobs looks awful! I have to wear padded bras because my nipples would always show otherwise. But a padded bra has a lot of structure to it and the shape of my breasts doesn't completely fill out the bra, so there's a void that kind of gets crushed. If I wear the wrong shirt, you can totally see where the part of my bra is a little distorted. I tried taking my bra off, but now I can see my nipples. It's kind of funny, but a little annoying. I have learned my lesson about looking in a full-length mirror before leaving the house for the day.
I also have another important anniversary coming up. On Monday it is my and Rusty's fifth wedding anniversary. I couldn't have asked for a better partner in life, and I look forward to many more years with my love.
Tuesday, January 19, 2010
The Great Unveiling
The Gauze Nightmare is over.
Today I went to see my plastic surgeon for a followup, and for him to remove the lovely padded bra I've been sporting for the last week. It started with him opening up the front velcro closure of the gauze bra. Immediately I felt a sense of relief and less compressed. It wasn't like a tourniquet or anything, but it was definitely putting pressure on my skin, not to mention the irritation.
Once the bra and associated gauze were removed, I could see that there were, indeed, gauze pasties that were stitched to my skin. He began snipping away the gauze and I could feel the scissors on my skin (a good thing!). He was very happy with the healthiness of the skin and he said that it looked great. From a layperson's viewpoint, it looks kind of bruised and it's obvious that it's not completely healed, but he's mostly concerned about whether or not the skin graft has taken. He said it was about 99% healthy. I'm gonna go ahead and assume 100% doesn't really happen. Don't ruin it for me.
There are some dissolving stitches where the graft is stitched to my skin, and the whole circle is kind of indented, but I expect that to even out over time. I can shower again (yay!) and for the next week I just have to keep the area most and covered with these neon yellow strips after I shower. So, I still have to wear the gauze bra, but at least it's not stuffed with more gauze!
They completely removed the steri-strips from my inner thigh, and that area is feeling pretty good. There is definitely some subcutaneous "toughness" that I assume is scar tissue. I hope that gets better because right now I don't feel like I can run or do yoga. I'm sure it will improve, I guess it's just a matter of when.
I'll see him again in 6 weeks. For the time being, I have to still be careful to avoid trauma to the area, I have to keep it clean, then dry, then moistened so that the skin graft heals properly. The stitches will eventually dissolve, and it will look fabulous :-) During the surgery he also removed a bit of a dog ear on one side, and it looks SO much better. I am so happy with how it looks now, and I can only imagine that it will look better as time goes on. Well worth it!
Today I went to see my plastic surgeon for a followup, and for him to remove the lovely padded bra I've been sporting for the last week. It started with him opening up the front velcro closure of the gauze bra. Immediately I felt a sense of relief and less compressed. It wasn't like a tourniquet or anything, but it was definitely putting pressure on my skin, not to mention the irritation.
Once the bra and associated gauze were removed, I could see that there were, indeed, gauze pasties that were stitched to my skin. He began snipping away the gauze and I could feel the scissors on my skin (a good thing!). He was very happy with the healthiness of the skin and he said that it looked great. From a layperson's viewpoint, it looks kind of bruised and it's obvious that it's not completely healed, but he's mostly concerned about whether or not the skin graft has taken. He said it was about 99% healthy. I'm gonna go ahead and assume 100% doesn't really happen. Don't ruin it for me.
There are some dissolving stitches where the graft is stitched to my skin, and the whole circle is kind of indented, but I expect that to even out over time. I can shower again (yay!) and for the next week I just have to keep the area most and covered with these neon yellow strips after I shower. So, I still have to wear the gauze bra, but at least it's not stuffed with more gauze!
They completely removed the steri-strips from my inner thigh, and that area is feeling pretty good. There is definitely some subcutaneous "toughness" that I assume is scar tissue. I hope that gets better because right now I don't feel like I can run or do yoga. I'm sure it will improve, I guess it's just a matter of when.
I'll see him again in 6 weeks. For the time being, I have to still be careful to avoid trauma to the area, I have to keep it clean, then dry, then moistened so that the skin graft heals properly. The stitches will eventually dissolve, and it will look fabulous :-) During the surgery he also removed a bit of a dog ear on one side, and it looks SO much better. I am so happy with how it looks now, and I can only imagine that it will look better as time goes on. Well worth it!
Friday, January 15, 2010
Captain's Log
Day 4 from the couch.
The native is getting restless. It's been several days since I've left the house, aside from my doctor's appointment on Wednesday. I haven't showered since Monday morning, though I did wash my hair yesterday and took a sponge bath.
I've mostly been sitting on the couch, since I can't do much physical activity. I have to make sure my chest is well protected and doesn't get bumped or pushed, and I can't move my legs too much or else the stitches will pull. I've been working from home (and eating) during the day and knitting at night. It's so hard to just sit at home all day with nothing to do. I am so looking forward to going back to work!
It's so ironic that I'm doing all this to feel better about myself and how I look in the mirror, and right now I look like a tragedy!
I don't mean to complain. I know this is all part of the process, but it's so odd to feel so good and be able to do so little. I can't wait until I am back to life and yoga.
The native is getting restless. It's been several days since I've left the house, aside from my doctor's appointment on Wednesday. I haven't showered since Monday morning, though I did wash my hair yesterday and took a sponge bath.
I've mostly been sitting on the couch, since I can't do much physical activity. I have to make sure my chest is well protected and doesn't get bumped or pushed, and I can't move my legs too much or else the stitches will pull. I've been working from home (and eating) during the day and knitting at night. It's so hard to just sit at home all day with nothing to do. I am so looking forward to going back to work!
It's so ironic that I'm doing all this to feel better about myself and how I look in the mirror, and right now I look like a tragedy!
I don't mean to complain. I know this is all part of the process, but it's so odd to feel so good and be able to do so little. I can't wait until I am back to life and yoga.
Wednesday, January 13, 2010
Post-Op #1
I had my first post-op appointment with the plastic surgeon today. Things look good. The donor site is healing pretty well, and I got a sneak peak underneath my bandages (though there wasn't really much to see).
My chest is currently covered with lots of gauze, held in place by a lovely netted bra. It has a velcro closure in the front, and there was a piece of the hook-and-loop that was scratching my skin until I covered it with medical tape. The doctor pulled away the gauze this morning to reveal what Rusty called "pasties" that are basically stuck to the grafted skin to protect it. That's really all I saw, but I could tell that the skin around the stitches was very healthy and not the slightest bit red, which is good. I expect that the surgeon will finally remove the gauze nightmare at my next follow-up, though the grafts will still be pretty sensitive.
The donor site (aka my inner thigh) is understandably a little messier. It's kind of hard to avoid moving my legs. During the surgery, they basically cut round "full-thickness" pieces of skin from my inner thigh (to graft onto my chest) and sewed the holes shut. They placed steri-strips over the incisions (steri-srips are basically surgical tape) and I have to keep the area clean and dry without touching it too much. Sounds like fun, huh? :-)
So, for the next several days I'll still be sans shower (even MORE fun) and just trying to take it easy... not walking much, not lifting much, etc. At least they haven't restricted me from knitting.
My chest is currently covered with lots of gauze, held in place by a lovely netted bra. It has a velcro closure in the front, and there was a piece of the hook-and-loop that was scratching my skin until I covered it with medical tape. The doctor pulled away the gauze this morning to reveal what Rusty called "pasties" that are basically stuck to the grafted skin to protect it. That's really all I saw, but I could tell that the skin around the stitches was very healthy and not the slightest bit red, which is good. I expect that the surgeon will finally remove the gauze nightmare at my next follow-up, though the grafts will still be pretty sensitive.
The donor site (aka my inner thigh) is understandably a little messier. It's kind of hard to avoid moving my legs. During the surgery, they basically cut round "full-thickness" pieces of skin from my inner thigh (to graft onto my chest) and sewed the holes shut. They placed steri-strips over the incisions (steri-srips are basically surgical tape) and I have to keep the area clean and dry without touching it too much. Sounds like fun, huh? :-)
So, for the next several days I'll still be sans shower (even MORE fun) and just trying to take it easy... not walking much, not lifting much, etc. At least they haven't restricted me from knitting.
Monday, January 11, 2010
I'm home!
Sorry to all of you feed readers out there... I accidentally created a blank "I'm Home" post. Here's the real one.
So, I am home from surgery. Things were running a little late at the hospital, but I was running a little early! I woke up out of anesthesia very quickly and I went home shortly afterward. The pain isn't too bad so far. I just feels like someone took sandpaper to my boobs, but that could actually be considered an improvement on the left side, considering I haven't felt much on that side since the mastectomy :-)
I have my first post-op appointment with the plastic surgeon on Wednesday. Originally, it was going to be Monday, but after the surgery they said they wanted me to come in on Wednesday. Not sure why, but I think maybe they just want to monitor the donor site.
After we left the hospital we made a quick stop to Chipotle. All day without dinner - I needed a burrito, STAT. It was soooooo delicious. And I didn't even feel bad about it because I haven't eaten all day.
Anyway, thanks everyone for the well wishes, the happy thoughts, the prayers, and the warm feelings. I will keep you posted in the days ahead.
So, I am home from surgery. Things were running a little late at the hospital, but I was running a little early! I woke up out of anesthesia very quickly and I went home shortly afterward. The pain isn't too bad so far. I just feels like someone took sandpaper to my boobs, but that could actually be considered an improvement on the left side, considering I haven't felt much on that side since the mastectomy :-)
I have my first post-op appointment with the plastic surgeon on Wednesday. Originally, it was going to be Monday, but after the surgery they said they wanted me to come in on Wednesday. Not sure why, but I think maybe they just want to monitor the donor site.
After we left the hospital we made a quick stop to Chipotle. All day without dinner - I needed a burrito, STAT. It was soooooo delicious. And I didn't even feel bad about it because I haven't eaten all day.
Anyway, thanks everyone for the well wishes, the happy thoughts, the prayers, and the warm feelings. I will keep you posted in the days ahead.
Surgery Update 2
Megan is out of surgery! I spoke to Dr McSteamy a little while ago and he was pleased with the results and everything was without incident (as expected). Megan is resting comfortably and I'll be able to see her in the recovery room after she "sobers up" from the anethesia.
Surgery Update
Things are a bit behind at the hospital, but just a few minutes ago at ~2:10 PM I saw Megan off to the operating room. Aside from being quite hungry, Megan is in great spirits and looking forward to being on the other side of today. The surgery will take about 1.5 hours, and she'll have another 2 hours or so in the recovery room to sleep off the anesthesia. I'll write back soon when I have more information available!
Surgery Today
I just realized I never posted my surgery time. We have to arrive at the day surgery center at 11:30, which means I probably won't actually go in until 12:30 or 1. The surgeon says it should take about an hour to an hour and a half, but we'll probably be there for 5 hours.
I'm so hungry!!!
I'm so hungry!!!
Tuesday, January 5, 2010
Building a Better Boob
Today I had my pre-op consult with my plastic surgeon (Tabouli McSteamy, you may remember from a blog entry almost 2 years ago). Yikes, it's been a long time. Anyway, we are about to complete what I hope to be the last stage of reconstruction - nipple reconstruction. At this point, it kind of seems a little too much to write about in a public forum to my family and friends, but why stop now?
Before the bilateral mastectomy, my oncological surgeon recommended that he remove both nipples as well as the breast tissue. The nipples are a part of the breast where cancer can grow, so they are oftentimes removed during a mastectomy. It was pretty much a sure thing with the side that had cancer, but I thought for the sake of symmetry (and to prevent recurrence, of course) I would be okay with removing the right one, too.
Several months after my tissue expander exchange I was mostly happy with the shape and feel of the new boobs, but there was definitely something missing. Well, two somethings. I thought I would be okay with getting nipples tattooed on, but the incision was slightly dog-eared and getting that fixed would require another surgery anyway. I decided pretty early on that I wanted to have nipple reconstruction, too.
The radiation on my left side has definitely left my left breast feeling different. The tissue is not as soft, and it's slightly redder. If it hadn't been radiated, my surgeon could have created a nipple using my existing skin. Instead, he'll take some skin from my inner thigh to prevent problems with wound healing. I've had a hard time finding details on how this is done, but here is a medical journal article with some pretty good pictures taken during the surgery. You'll want to scroll down to the "Technique" section and click on the "Figure" links to see how it works. Interesting stuff, but I'm glad I'll be asleep during the procedure.
The surgery is scheduled for Monday, January 11th, and it's expected to last about an hour. I'll go home with bandages that I can't remove until my post-op appointment on the following Monday. That means no showering for a week. Yeah! I'll have some discomfort at the donor site, but I hope to return to work on the Wednesday after my post-op appointment. It's supposedly a much less intense surgery than the tissue expander exchange (and certainly a lot easier than the mastectomy), but I think the skin graft thing makes the healing process a lot more fragile.
I'm pretty excited about the whole thing, but work has been kind of crazy so I'm not looking forward to losing all that time and then coming back afterward.
I believe you may be treated to a blog from at least one guest blogger on that day, but I may check in before then when I know the time of my surgery (to be determined on Friday). Thanks for reading!
Before the bilateral mastectomy, my oncological surgeon recommended that he remove both nipples as well as the breast tissue. The nipples are a part of the breast where cancer can grow, so they are oftentimes removed during a mastectomy. It was pretty much a sure thing with the side that had cancer, but I thought for the sake of symmetry (and to prevent recurrence, of course) I would be okay with removing the right one, too.
Several months after my tissue expander exchange I was mostly happy with the shape and feel of the new boobs, but there was definitely something missing. Well, two somethings. I thought I would be okay with getting nipples tattooed on, but the incision was slightly dog-eared and getting that fixed would require another surgery anyway. I decided pretty early on that I wanted to have nipple reconstruction, too.
The radiation on my left side has definitely left my left breast feeling different. The tissue is not as soft, and it's slightly redder. If it hadn't been radiated, my surgeon could have created a nipple using my existing skin. Instead, he'll take some skin from my inner thigh to prevent problems with wound healing. I've had a hard time finding details on how this is done, but here is a medical journal article with some pretty good pictures taken during the surgery. You'll want to scroll down to the "Technique" section and click on the "Figure" links to see how it works. Interesting stuff, but I'm glad I'll be asleep during the procedure.
The surgery is scheduled for Monday, January 11th, and it's expected to last about an hour. I'll go home with bandages that I can't remove until my post-op appointment on the following Monday. That means no showering for a week. Yeah! I'll have some discomfort at the donor site, but I hope to return to work on the Wednesday after my post-op appointment. It's supposedly a much less intense surgery than the tissue expander exchange (and certainly a lot easier than the mastectomy), but I think the skin graft thing makes the healing process a lot more fragile.
I'm pretty excited about the whole thing, but work has been kind of crazy so I'm not looking forward to losing all that time and then coming back afterward.
I believe you may be treated to a blog from at least one guest blogger on that day, but I may check in before then when I know the time of my surgery (to be determined on Friday). Thanks for reading!
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