17 Weeks Post-Mastectomy
It's nearly 4 months since my mastectomy surgery, and almost 4 weeks since the implant surgery. It doesn't sound like a long time, does it? But it feels like so much more...
I was looking forward in my calendar this morning, because I needed to plan some work commitments. When I got to November, I found a note I'd written to myself to schedule my annual mammogram. I felt an odd contradiction of happy and sad that I'd never have to do that again.
The Implants
I'm still getting used to the implants - the "new normal". I wonder if there will ever come a time when I don't notice how different they feel from natural breasts. It's been an interesting anatomy lesson, because every time I use my arms, especially in ways which require a bit of strength or force (which I do frequently in my work) I am conscious of exactly which chest wall muscles contract correspondingly - I can feel them squeezing the implants (remember that the implants were placed under the muscle). Although much softer than the tissue expanders, it is still not comfortable to lie on my stomach. This is not a position I adopt regularly as I do not sleep that way, but I do it in certain yoga positions.
My Other Life
I am exhibiting at the Sawdust Art Festival in Laguna Beach (I design & make jewelry) through all of July and August, which means I currently have an insane schedule. I am not exaggerating when I say that, during the show, I work more than 90 hours a week. So... no more posts until September, unless something newsworthy happens. If you happen to visit the show, please look me up in booth #223 and say "hi". Medically, I am at the point where both my surgeons are content to leave me alone until after the show, when they want to see me again for check-ups.
Sunday, July 10, 2011
Thursday, June 16, 2011
Soft
94 Days Post-Mastectomy
As promised, yesterday's surgery was no big deal. I was back at Mission Hospital, where I'm guessing that 7 am is the earliest scheduled slot for out-patient surgery, because there was a line of us arriving at the same time (5:30 am). I had the same pre-op bed as when I went in for the mastectomy, which was nice because it was in a room, not just curtained off from other beds. The pre-op wait was much shorter this time, as there was nothing special required (like the nuclear dye to trace sentinal nodes which I had to have the last time). After I'd been hooked up and monitored, Dr. Doezie arrived and marked up my chest. The surgery started on time and went perfectly, so Pete was told.
I have to say that it felt that the hospital didn't so much discharge me as boot me out. As soon as the nurse in Recovery noticed my eyes were open, she asked if I wanted some water - which of course I did as my throat was sore from the anesthesia tube - and within less than a minute of delivering it was asking me if I was ready to go or did I need a little more time? Since I still couldn't really keep my eyes open, I croaked out "more time". Which I got, but not much.
So, we left the hospital around 11 am, and I basically slept the rest of the day at home.
The implants are, as everyone had told me they would be, soft and pliable and not at all like the tissue expanders. I'm still not sure exactly what the final result will look like, because there's swelling all around, and of course the incisions from the first surgery were cut open again for this one, and my chest was bound up with an ace bandage, all of which contributes to the slightly squashed look I currently have. I don't know what to expect when I look in the mirror any more, with so many changes happening to my chest over the last 3 months. I confess I was afraid to take the ace bandage off and see what I look like now, because this is it (sort of)!
As far as pain goes, there is very little. I took some percocet yesterday and early this morning, as instructed, but that was it.
Today Pete had to take me back to Dr. Doezie's for a post-op appointment. He had to learn to do some simple manipulation of the implants, which is supposed to help prevent scar tissue forming and causing capsular contraction. It hurt a little bit, but the exercise only last 10 seconds on each side. It's supposed to be done twice a day for 2 months - after a couple of weeks I should be able to do it myself.
As promised, yesterday's surgery was no big deal. I was back at Mission Hospital, where I'm guessing that 7 am is the earliest scheduled slot for out-patient surgery, because there was a line of us arriving at the same time (5:30 am). I had the same pre-op bed as when I went in for the mastectomy, which was nice because it was in a room, not just curtained off from other beds. The pre-op wait was much shorter this time, as there was nothing special required (like the nuclear dye to trace sentinal nodes which I had to have the last time). After I'd been hooked up and monitored, Dr. Doezie arrived and marked up my chest. The surgery started on time and went perfectly, so Pete was told.
I have to say that it felt that the hospital didn't so much discharge me as boot me out. As soon as the nurse in Recovery noticed my eyes were open, she asked if I wanted some water - which of course I did as my throat was sore from the anesthesia tube - and within less than a minute of delivering it was asking me if I was ready to go or did I need a little more time? Since I still couldn't really keep my eyes open, I croaked out "more time". Which I got, but not much.
So, we left the hospital around 11 am, and I basically slept the rest of the day at home.
The implants are, as everyone had told me they would be, soft and pliable and not at all like the tissue expanders. I'm still not sure exactly what the final result will look like, because there's swelling all around, and of course the incisions from the first surgery were cut open again for this one, and my chest was bound up with an ace bandage, all of which contributes to the slightly squashed look I currently have. I don't know what to expect when I look in the mirror any more, with so many changes happening to my chest over the last 3 months. I confess I was afraid to take the ace bandage off and see what I look like now, because this is it (sort of)!
As far as pain goes, there is very little. I took some percocet yesterday and early this morning, as instructed, but that was it.
Today Pete had to take me back to Dr. Doezie's for a post-op appointment. He had to learn to do some simple manipulation of the implants, which is supposed to help prevent scar tissue forming and causing capsular contraction. It hurt a little bit, but the exercise only last 10 seconds on each side. It's supposed to be done twice a day for 2 months - after a couple of weeks I should be able to do it myself.
Tuesday, June 14, 2011
New Breasts Tomorrow
92 Days Post-Op
This past week has been so exhausting that I'm thinking they won't need anesthesia to knock me out tomorrow when I have the surgery to replace my tissue expanders with implants. In addition to various work commitments, I received a call from Dr. D's office on Monday saying that I had to have new labwork done before tomorrow's surgery. So I had to find a way to squeeze in a trip to a lab to get blood drawn and pee in a cup.
I have to be at the hospital at 5:30 am for a 7:00 am surgery, but if they manage to stay on schedule, I should be home by lunchtime (it's outpatient this time). I briefly, but seriously, considered just pulling an all-nighter because I have so much STUFF to do. But I was never able to do that, even in college, so I'm off to bed next.
Thanks to Stuart and Isabelle, and of course Pete, for all the help with shows and booth preparations these past few days!
This past week has been so exhausting that I'm thinking they won't need anesthesia to knock me out tomorrow when I have the surgery to replace my tissue expanders with implants. In addition to various work commitments, I received a call from Dr. D's office on Monday saying that I had to have new labwork done before tomorrow's surgery. So I had to find a way to squeeze in a trip to a lab to get blood drawn and pee in a cup.
I have to be at the hospital at 5:30 am for a 7:00 am surgery, but if they manage to stay on schedule, I should be home by lunchtime (it's outpatient this time). I briefly, but seriously, considered just pulling an all-nighter because I have so much STUFF to do. But I was never able to do that, even in college, so I'm off to bed next.
Thanks to Stuart and Isabelle, and of course Pete, for all the help with shows and booth preparations these past few days!
Monday, June 6, 2011
Turning Into the Homestretch
12 Weeks Post-op
This past week I had my pre-op appointment with Dr. Doezie - outpatient surgery to get my silicone implants will be on June 15th.
The big (ha, ha) question is: what size? It's not as straightforward as one might think. Should I stay exactly the same as I was before? I don't think they make implants that small ;)
So here's a confession: I am going to be a bit bigger. But just a bit. My previous bra size was 36B, but I didn't fill it out (in reality I was probably a 37A). So I decided I wanted to look the same way I did when I was wearing the 36B, only without the bra. Because the implant is under muscle, not just skin, and because I'll still be a relatively small size, I won't have to wear a bra anymore (yippee).
The implants come in set sizes and are measured in milliliters. So I can have a 304 ml or 339 ml but not, for example, a 325 ml. I know of one woman whose implants are in the region of 800 ml (definitely not for me). The tissue expansion process I've been going through has helped me judge size, but it's still a guessing game because the shape of the tissue expanders is different from the shape of the implants. The expanders are designed to push straight out because their function, after all, is to stretch muscle and skin. And the implants have a little droop because their function, after all, is to mimic a breast. So 300 ml in the tissue expander sticks out a lot farther than 300 ml in a silicone implant. And then there's the fact that implants have narrow, medium and wide bases, and high, medium, and low profiles. So the same volume looks vastly different from one model to the next.
And then there's the me factor: I'm built with a broad ribcage and a wide sternum, which means that where I should have cleavage, I in fact have a valley big enough to land a jet plane.
I read a suggestion on the internet to fill a plastic bag with an equivalent amount of rice (or in my case, cous-cous) to judge your implant size. So I measured out 339 ml of cous-cous... but then what? It's comical, really, only if I choose the wrong size, it's not like I can exchange them (well, I could, but that would mean another surgery and I doubt insurance would consider "oops" a medically necessary justification).
This past week I had my pre-op appointment with Dr. Doezie - outpatient surgery to get my silicone implants will be on June 15th.
The big (ha, ha) question is: what size? It's not as straightforward as one might think. Should I stay exactly the same as I was before? I don't think they make implants that small ;)
So here's a confession: I am going to be a bit bigger. But just a bit. My previous bra size was 36B, but I didn't fill it out (in reality I was probably a 37A). So I decided I wanted to look the same way I did when I was wearing the 36B, only without the bra. Because the implant is under muscle, not just skin, and because I'll still be a relatively small size, I won't have to wear a bra anymore (yippee).
The implants come in set sizes and are measured in milliliters. So I can have a 304 ml or 339 ml but not, for example, a 325 ml. I know of one woman whose implants are in the region of 800 ml (definitely not for me). The tissue expansion process I've been going through has helped me judge size, but it's still a guessing game because the shape of the tissue expanders is different from the shape of the implants. The expanders are designed to push straight out because their function, after all, is to stretch muscle and skin. And the implants have a little droop because their function, after all, is to mimic a breast. So 300 ml in the tissue expander sticks out a lot farther than 300 ml in a silicone implant. And then there's the fact that implants have narrow, medium and wide bases, and high, medium, and low profiles. So the same volume looks vastly different from one model to the next.
And then there's the me factor: I'm built with a broad ribcage and a wide sternum, which means that where I should have cleavage, I in fact have a valley big enough to land a jet plane.
I read a suggestion on the internet to fill a plastic bag with an equivalent amount of rice (or in my case, cous-cous) to judge your implant size. So I measured out 339 ml of cous-cous... but then what? It's comical, really, only if I choose the wrong size, it's not like I can exchange them (well, I could, but that would mean another surgery and I doubt insurance would consider "oops" a medically necessary justification).
Wednesday, May 25, 2011
Not Much
10 Weeks and a Bit
Just some odds and ends to report. Last week I had what was probably my final physical therapy appointment - I'll carry on with my exercises at home. My range of motion is, I think, back to normal, with only minor discomfort when I really stretch.
I had my 4th follow-up visit with Dr. Kushner this week, and it was pretty straightforward. Everything is looking good. He'd like to check up on me again in September, but I think our relationship is coming to an end.
Next week I have my pre-op appointment with Dr. Doezie, the last one before the surgery to swap out the tissue expanders for the implants.
I've added some links and resources to the blog, just in case some other breast cancer patient stumbles upon it looking for information.
Just some odds and ends to report. Last week I had what was probably my final physical therapy appointment - I'll carry on with my exercises at home. My range of motion is, I think, back to normal, with only minor discomfort when I really stretch.
I had my 4th follow-up visit with Dr. Kushner this week, and it was pretty straightforward. Everything is looking good. He'd like to check up on me again in September, but I think our relationship is coming to an end.
Next week I have my pre-op appointment with Dr. Doezie, the last one before the surgery to swap out the tissue expanders for the implants.
I've added some links and resources to the blog, just in case some other breast cancer patient stumbles upon it looking for information.
Monday, May 16, 2011
2 Months
9 Weeks Post-op
Just over 2 months since my surgery. Just over 3 since the diagnosis. It sounds like such a short period of time, but so much has happened. I suppose any great period of change has odd time warps: slow and fast, long and short.
Today's post is just a quick update. Last week marked a milestone: my first week without doctor's appointments since January. Although today I did have a physical therapy session - probably my last one. Doing my exercises has dramatically improved my ability to use my arms, and now it's really just a question of staying with the program.
The Dust
Last week was Booth Pick for the Sawdust - an event causing me great anxiety because my lottery draw meant I might not get a booth for the summer show. And not getting a booth for the summer show would be the financial equivalent of losing my job on top of everything else. However, I did get a space. And so the madness that is being an artist in the Sawdust Art Festival begins....
Just over 2 months since my surgery. Just over 3 since the diagnosis. It sounds like such a short period of time, but so much has happened. I suppose any great period of change has odd time warps: slow and fast, long and short.
Today's post is just a quick update. Last week marked a milestone: my first week without doctor's appointments since January. Although today I did have a physical therapy session - probably my last one. Doing my exercises has dramatically improved my ability to use my arms, and now it's really just a question of staying with the program.
The Dust
Last week was Booth Pick for the Sawdust - an event causing me great anxiety because my lottery draw meant I might not get a booth for the summer show. And not getting a booth for the summer show would be the financial equivalent of losing my job on top of everything else. However, I did get a space. And so the madness that is being an artist in the Sawdust Art Festival begins....
Friday, April 29, 2011
A Maze of Mini Meltdowns
Day 46 Post-Op
In the spirit of full disclosure (which has been, after all, one of the purposes of this blog), I have to say that it has been a very difficult week, emotionally. I found myself in a state where just about anything would make me cry. Even though my brain was saying "be reasonable, this is not that bad," tears were leaking out and serious nose-blowing had to be done. Is it a cumulative effect of pressures I didn't even know I was feeling, or just a run-of-the-mill bout of self-pity? I don't know.
Mostly, I think it's work-related pressure. Being a self-employed craftsperson (a jeweler), this illness has taken a sledgehammer to my productivity. I am entering the time of the year when I make the vast majority of my small income, and I am far behind on creating my work. I find myself here, Friday evening, beating myself up because I haven't made a single piece this week, and then I think about my schedule and realize why:
1. I spent most of Monday driving to LA and back, because I needed to drop off some waxes for casting, and one of them was so delicate I couldn't think of a way to safely package it for shipping. Then I went to the support group in the evening.
2. I have had 4 medical appointments this week (5 if one includes the support group), all on different days. But hey, one of them wasn't cancer-related: I had my semi-annual dental cleaning. Although, because of my surgery, I had to remember to take antibiotics before and after the appointment.
3. This week's visit to Dr. Doezie for the final fill of the tissue expanders meant another lost day, because the aches & pains after a fill make me mostly useless for 24-48 hours.
4. I made a special trip to my engraver, because I needed an inscription done on a pair of custom wedding rings I'd made several months ago, and I was unwilling to let the rings out of my possession. The engraver had agreed to do it while I waited, but when I arrived I found that he had a problem with his machine, and it hadn't occurred to him to call me and tell me not to come.
5. I was called in this morning at very short notice to substitute teach a jewelry class at the Sawdust Studio Art Classes, and knowing it was important to them to NOT cancel the class, I gave up my plans to spend the morning working in my studio.
6. And a bunch of other time-sucking stuff. Such as arguing with a company that charged me twice for the same thing. Which I discovered when I was checking to see if my credit card company had sent my new card, since the current one expires this month and the replacement had not arrived. I get 42 offers a day to sign up for new credit cards, but it seems that the one I DO have failed to notice that the card was expiring, so in fact, they had not sent me a new one.
What's Next
In my current over-expanded mammary state, I am far more self-conscious of my appearance than I was immediately following the mastectomy, when I had a nearly-flat chest. And, as I've mentioned before, the tissue expanders are hard and uncomfortable. So I'm anxious to get them swapped out for the silicone implants, which everyone promises me will be soft & comfortable & not stick out like grapefruits. Medically, this could happen in a month. However, scheduling issues between Dr. Doezie & Mission Hospital delayed the surgery date to June 8th, which is the day before I'm supposed to be setting up for a show in Santa Monica. As much as I might like to, I cannot afford to withdraw from the show, so the next available date was June 15th. Which is during the most stressful and overloaded week of the year for me - the week before the Sawdust Art Festival's Preview Party. Preview Party is the private opening night, 2 days before the official opening. And the official opening means that I will be working 90 hours a week or more, without a day off, until the end of August (the show is open 10 am - 10 pm EVERY day).
That is, assuming I get into the Sawdust Art Festival this summer. To make a complicated situation simple, I'll just say that booth assignments are done on a lottery system - the luck of the draw. And my lottery number this year is horrible - the worst one I've had yet. So horrible that I am unlikely to get a space in the show unless someone agrees to let me share theirs. I've been trying for the past 3 months to find someone who will help me out, so far without success. And the constant rejection has really been hard to take. Sniff.
In the spirit of full disclosure (which has been, after all, one of the purposes of this blog), I have to say that it has been a very difficult week, emotionally. I found myself in a state where just about anything would make me cry. Even though my brain was saying "be reasonable, this is not that bad," tears were leaking out and serious nose-blowing had to be done. Is it a cumulative effect of pressures I didn't even know I was feeling, or just a run-of-the-mill bout of self-pity? I don't know.
Mostly, I think it's work-related pressure. Being a self-employed craftsperson (a jeweler), this illness has taken a sledgehammer to my productivity. I am entering the time of the year when I make the vast majority of my small income, and I am far behind on creating my work. I find myself here, Friday evening, beating myself up because I haven't made a single piece this week, and then I think about my schedule and realize why:
1. I spent most of Monday driving to LA and back, because I needed to drop off some waxes for casting, and one of them was so delicate I couldn't think of a way to safely package it for shipping. Then I went to the support group in the evening.
2. I have had 4 medical appointments this week (5 if one includes the support group), all on different days. But hey, one of them wasn't cancer-related: I had my semi-annual dental cleaning. Although, because of my surgery, I had to remember to take antibiotics before and after the appointment.
3. This week's visit to Dr. Doezie for the final fill of the tissue expanders meant another lost day, because the aches & pains after a fill make me mostly useless for 24-48 hours.
4. I made a special trip to my engraver, because I needed an inscription done on a pair of custom wedding rings I'd made several months ago, and I was unwilling to let the rings out of my possession. The engraver had agreed to do it while I waited, but when I arrived I found that he had a problem with his machine, and it hadn't occurred to him to call me and tell me not to come.
5. I was called in this morning at very short notice to substitute teach a jewelry class at the Sawdust Studio Art Classes, and knowing it was important to them to NOT cancel the class, I gave up my plans to spend the morning working in my studio.
6. And a bunch of other time-sucking stuff. Such as arguing with a company that charged me twice for the same thing. Which I discovered when I was checking to see if my credit card company had sent my new card, since the current one expires this month and the replacement had not arrived. I get 42 offers a day to sign up for new credit cards, but it seems that the one I DO have failed to notice that the card was expiring, so in fact, they had not sent me a new one.
What's Next
In my current over-expanded mammary state, I am far more self-conscious of my appearance than I was immediately following the mastectomy, when I had a nearly-flat chest. And, as I've mentioned before, the tissue expanders are hard and uncomfortable. So I'm anxious to get them swapped out for the silicone implants, which everyone promises me will be soft & comfortable & not stick out like grapefruits. Medically, this could happen in a month. However, scheduling issues between Dr. Doezie & Mission Hospital delayed the surgery date to June 8th, which is the day before I'm supposed to be setting up for a show in Santa Monica. As much as I might like to, I cannot afford to withdraw from the show, so the next available date was June 15th. Which is during the most stressful and overloaded week of the year for me - the week before the Sawdust Art Festival's Preview Party. Preview Party is the private opening night, 2 days before the official opening. And the official opening means that I will be working 90 hours a week or more, without a day off, until the end of August (the show is open 10 am - 10 pm EVERY day).
That is, assuming I get into the Sawdust Art Festival this summer. To make a complicated situation simple, I'll just say that booth assignments are done on a lottery system - the luck of the draw. And my lottery number this year is horrible - the worst one I've had yet. So horrible that I am unlikely to get a space in the show unless someone agrees to let me share theirs. I've been trying for the past 3 months to find someone who will help me out, so far without success. And the constant rejection has really been hard to take. Sniff.
Monday, April 25, 2011
Keepin' On
6 Weeks Post Op
Six weeks doesn't sound like a long time, yet it seems a lifetime since my mastectomy. I'm diligently doing my physical therapy exercises, and seeing good improvements from them. Some days they are easier than others.
I attended my second support group meeting tonight - there were a few newcomers, and it reinforced what I felt the first time I went: the group is as much about helping someone else as it is about helping yourself.
Show Us Your Bra
It's time for another piece of art from the "Show Us Your Bra" calendar that Daria gave me - this one is called "Chosen 2 B Beautiful" and the artist is Anwar Robinson:
Six weeks doesn't sound like a long time, yet it seems a lifetime since my mastectomy. I'm diligently doing my physical therapy exercises, and seeing good improvements from them. Some days they are easier than others.
I attended my second support group meeting tonight - there were a few newcomers, and it reinforced what I felt the first time I went: the group is as much about helping someone else as it is about helping yourself.
Show Us Your Bra
It's time for another piece of art from the "Show Us Your Bra" calendar that Daria gave me - this one is called "Chosen 2 B Beautiful" and the artist is Anwar Robinson:
Friday, April 22, 2011
Physical Therapy
Day 39 Post-Op
Yesterday I went for my first physical therapy treatment. Fortunately, they are located not too far away, in Newport Center, which is closer than any of the other doctors I've been visiting.
I have to say they were quite gentle - they did not push me nearly as hard as I had been pushing myself during my week of do-it-yourself stretching. It seems that there is a philosophy other than "no pain, no gain"!
The problems I'm working on are:
1. chest and shoulder muscles, which feel tight because of the surgery & reconstruction process (and consequent lack of use),
2. neck pain, no doubt due to lack of normal moving & stretching these last 6 weeks, and also to the way I've had to sleep, and
3. a searing pain from my right underarm incision site down to my elbow, as a result of the sentinal node biopsy surgery. Fortunately, I only feel this when I stretch out that arm (not during normal daily activity), and it is getting better.
Other than that, I feel fine!
Yesterday I went for my first physical therapy treatment. Fortunately, they are located not too far away, in Newport Center, which is closer than any of the other doctors I've been visiting.
I have to say they were quite gentle - they did not push me nearly as hard as I had been pushing myself during my week of do-it-yourself stretching. It seems that there is a philosophy other than "no pain, no gain"!
The problems I'm working on are:
1. chest and shoulder muscles, which feel tight because of the surgery & reconstruction process (and consequent lack of use),
2. neck pain, no doubt due to lack of normal moving & stretching these last 6 weeks, and also to the way I've had to sleep, and
3. a searing pain from my right underarm incision site down to my elbow, as a result of the sentinal node biopsy surgery. Fortunately, I only feel this when I stretch out that arm (not during normal daily activity), and it is getting better.
Other than that, I feel fine!
Monday, April 18, 2011
Professional Rehab
5 Weeks Post-Op
Well, I thought I would be announcing that this was to be my first week since January without doctors appointments, but I'm not. OK, technically it is, since the appointment this week is with a physical therapist, not an MD, but let's not be pedantic. After nearly a week of do-it-yourself stretching to get my range of motion back in my arms, I decided I want professional help. Plus I'm having ongoing problems with my neck as a downstream effect of all this. I can now lay on my side for short periods of time, although it's not really comfortable - it's just a nice change from having to sleep flat on my back.
Arranging it only took 5 phone calls:
1. Called Dr. Doezie's office to get the prescription written for the physical therapy.
2. Called the PT his office recommended to see if they accept my health insurance. They didn't actually know the answer to this question, so they told me to call their medical biller.
3. Called the medical biller, so see if they accept my health insurance. They don't.
4. Called another PT, the only one within 20 miles which came up on the online provider database my insurance company has (this one is actually more convenient for me anyway), made an appointment.
5. Called Dr. D's office again to tell them where to fax the prescription order.
Well, I thought I would be announcing that this was to be my first week since January without doctors appointments, but I'm not. OK, technically it is, since the appointment this week is with a physical therapist, not an MD, but let's not be pedantic. After nearly a week of do-it-yourself stretching to get my range of motion back in my arms, I decided I want professional help. Plus I'm having ongoing problems with my neck as a downstream effect of all this. I can now lay on my side for short periods of time, although it's not really comfortable - it's just a nice change from having to sleep flat on my back.
Arranging it only took 5 phone calls:
1. Called Dr. Doezie's office to get the prescription written for the physical therapy.
2. Called the PT his office recommended to see if they accept my health insurance. They didn't actually know the answer to this question, so they told me to call their medical biller.
3. Called the medical biller, so see if they accept my health insurance. They don't.
4. Called another PT, the only one within 20 miles which came up on the online provider database my insurance company has (this one is actually more convenient for me anyway), made an appointment.
5. Called Dr. D's office again to tell them where to fax the prescription order.
Thursday, April 14, 2011
Rehab
Day 31 Post-Op
At my appointment this past Tuesday, Dr. Doezie declared that my movements were now "unrestricted". All very well in theory, but not in reality. Now that I have permission to lift my arms above 90° again, and to start working out, I've discovered that I can't. Well, I can, but in a very limited way. It's a little hard for me to accept that simply lifting my arms straight up over my head is an achievement I have to work at, but that's about where I'm at.
At my appointment this past Tuesday, Dr. Doezie declared that my movements were now "unrestricted". All very well in theory, but not in reality. Now that I have permission to lift my arms above 90° again, and to start working out, I've discovered that I can't. Well, I can, but in a very limited way. It's a little hard for me to accept that simply lifting my arms straight up over my head is an achievement I have to work at, but that's about where I'm at.
Tuesday, April 12, 2011
Second Fill-up
Day 29 Post Op
It's been just over 4 weeks since the surgery. I had another appointment with Dr. Doezie today, for the second top-up of the tissue expanders. As I've said before, the tissue expanders are hard and lumpy & bumpy, so it's difficult for me to imagine what I will look like with silicone implants of equivalent volume, so we spent some time discussing that. Currently, I'm thinking that the right size for me is somewhere between where I was after the first top-up and where I am now, after the second one. This means that I will have one more step in the expansion, because Dr. Doezie over-expands by 100cc during the stretching process, to make sure there is enough space for the implant even if the muscles contract a bit after the final surgery.
Today's procedure has cause a significant amount of pain - much more than the first top-up, so I had to take some of my pain meds and spend most of the day resting.
Give and Take
Yesterday evening I went to the support group at the Women's Wellness Center, having managed to turn up on the correct evening this time! Of course it takes time to get used to any new group dynamic, but what struck me most was that the women turn up as much to offer support to others as they do to take it for themselves. That was certainly my motivation - I had some questions about reconstruction, but I was also there to share what I've learned.
It's been just over 4 weeks since the surgery. I had another appointment with Dr. Doezie today, for the second top-up of the tissue expanders. As I've said before, the tissue expanders are hard and lumpy & bumpy, so it's difficult for me to imagine what I will look like with silicone implants of equivalent volume, so we spent some time discussing that. Currently, I'm thinking that the right size for me is somewhere between where I was after the first top-up and where I am now, after the second one. This means that I will have one more step in the expansion, because Dr. Doezie over-expands by 100cc during the stretching process, to make sure there is enough space for the implant even if the muscles contract a bit after the final surgery.
Today's procedure has cause a significant amount of pain - much more than the first top-up, so I had to take some of my pain meds and spend most of the day resting.
Give and Take
Yesterday evening I went to the support group at the Women's Wellness Center, having managed to turn up on the correct evening this time! Of course it takes time to get used to any new group dynamic, but what struck me most was that the women turn up as much to offer support to others as they do to take it for themselves. That was certainly my motivation - I had some questions about reconstruction, but I was also there to share what I've learned.
Tuesday, April 5, 2011
Oncologist Consultation
Day 22 Post-Op
I had my oncology follow-up with Dr. Howard Cheng today. It was short & sweet - he confirmed that I don't need any further treatment. As I expected, because the hormone receptor tests were negative, no adjuvent therapy (such as tamoxifen) is called for.
But here's a surprise: I still have to do breast exams. What, one wonders, is left to examine? It seems that a thin layer of breast tissue is still left under the skin, even after a mastectomy. So he won't say that my chances of ever having breast cancer again are zero, but they are very, very, very, very, very, very, very (you get the idea) remote. So although mammograms will no longer be a part of my life, self-checks and an annual physician exam will be. Easy enough.
Being Thankful, Part 6
I am grateful every day that this was caught so early - that from the beginning everyone assured me that I would be fine. And that, consequently, my treatment does not require chemotherapy. So I am thankful, thankful, thankful for the early diagnosis.
I had my oncology follow-up with Dr. Howard Cheng today. It was short & sweet - he confirmed that I don't need any further treatment. As I expected, because the hormone receptor tests were negative, no adjuvent therapy (such as tamoxifen) is called for.
But here's a surprise: I still have to do breast exams. What, one wonders, is left to examine? It seems that a thin layer of breast tissue is still left under the skin, even after a mastectomy. So he won't say that my chances of ever having breast cancer again are zero, but they are very, very, very, very, very, very, very (you get the idea) remote. So although mammograms will no longer be a part of my life, self-checks and an annual physician exam will be. Easy enough.
Being Thankful, Part 6
I am grateful every day that this was caught so early - that from the beginning everyone assured me that I would be fine. And that, consequently, my treatment does not require chemotherapy. So I am thankful, thankful, thankful for the early diagnosis.
Saturday, April 2, 2011
Almost Normal
Day 19 Post-Op
Our Saturday morning ritual is back to normal - after coffee & croissants on the bench at Diver's Cove, Pete and I went our separate ways for walking. I'm almost back to my usual pace. The exercise does cause my chest muscles to spasm, but when I mentioned this to Dr. Doezie at this week's visit, he didn't seem to think it was any cause for concern - he gave me the OK to go ahead with the walking & hiking.
I'm still quite restricted on what I can do with my arms, though - he says no lifting them above 90° for 4 weeks. At least I can now pick up slightly heavier objects. When I left the hospital I was instructed to not even lift a gallon of milk, but I can do that and a little more now.
Being Thankful, Part 5
I am normally resistant to new technology until the universe proves to me that said technology will, in fact, make my life easier and not just frustrate me with its glitches and deficiencies. But Mom & Mike generously sent me a Kindle as a get-well gift, and I love it. Not unreservedly, it does have some disadvantages over paper and ink books, but its light weight and the built-in booklight in the cover make reading in bed much more practical and comfortable, and I don't have to find creative ways to prop it open when I read at the dining table (as I have to with books).
So for this, and for the other friends & family who have helped to keep me entertained while I am recovering by giving me books, loaning me DVDs and sending me Amazon gift certificates (which I have used to load up the Kindle), I am thankful.
Our Saturday morning ritual is back to normal - after coffee & croissants on the bench at Diver's Cove, Pete and I went our separate ways for walking. I'm almost back to my usual pace. The exercise does cause my chest muscles to spasm, but when I mentioned this to Dr. Doezie at this week's visit, he didn't seem to think it was any cause for concern - he gave me the OK to go ahead with the walking & hiking.
I'm still quite restricted on what I can do with my arms, though - he says no lifting them above 90° for 4 weeks. At least I can now pick up slightly heavier objects. When I left the hospital I was instructed to not even lift a gallon of milk, but I can do that and a little more now.
Being Thankful, Part 5
I am normally resistant to new technology until the universe proves to me that said technology will, in fact, make my life easier and not just frustrate me with its glitches and deficiencies. But Mom & Mike generously sent me a Kindle as a get-well gift, and I love it. Not unreservedly, it does have some disadvantages over paper and ink books, but its light weight and the built-in booklight in the cover make reading in bed much more practical and comfortable, and I don't have to find creative ways to prop it open when I read at the dining table (as I have to with books).
So for this, and for the other friends & family who have helped to keep me entertained while I am recovering by giving me books, loaning me DVDs and sending me Amazon gift certificates (which I have used to load up the Kindle), I am thankful.
Wednesday, March 30, 2011
First Fill-Up
Day 15 Post-Op
In my morning appointment with Dr. Doezie he added 100 cc of saline to each of my tissue expanders. The tissue expanders have a metal port in them, and he uses a magnet to locate it so he knows where to guide the needle. He did apply a local anesthetic, but my skin in that area is still numb so I'm not sure that was needed. During my operation, when he inserted the tissue expanders to start the reconstruction process, he had put in the first 100 cc of saline (which is between 1/3 and 1/2 cup fluid for those of us not used to the metric system), which wasn't enough to make me look like I had any kind of breast, but which was enough my make my chest muscles object. Before he started I said "It doesn't feel like there's any room," and he just smiled knowingly. It most definitely increased my discomfort level, but a muscle relaxer and some ibuprofen were all I really needed to manage it.
My chest is still very lumpy & bumpy, and and this stage I cannot visualize what the end result will be. I know that I have to be patient and not worry about what I look like at this point, but still...
I knew from talking with other mastectomy patients going through reconstruction that the tissue expanders are hard and unyielding - and they were not exaggerating. I have been having to sleep on my back ever since surgery, which is not what I like to do - I normally sleep on my side. But I don't think I'll be able to do that again until after the tissue expanders are replaced with the silicone implants.
Dr. Kushner
In the afternoon I had a follow-up with Dr. Kushner, mainly to discuss the pathology report. It turned out that both my breasts were what he described as "fertile breeding grounds for cancer." They had "proliferative fibrocystic changes", "sclerosing adenosis," "ductal hyperplasia," "radial scars," and some other stuff. The combination of all these things happening in each breast, in someone under 50, was, in his mind, cause for serious concern. Obviously there is no going back from the decisions I made, so in a practical sense it doesn't matter what the report says. But I do find comfort in the reassurance it gives me that I made the right choices for me.
In my morning appointment with Dr. Doezie he added 100 cc of saline to each of my tissue expanders. The tissue expanders have a metal port in them, and he uses a magnet to locate it so he knows where to guide the needle. He did apply a local anesthetic, but my skin in that area is still numb so I'm not sure that was needed. During my operation, when he inserted the tissue expanders to start the reconstruction process, he had put in the first 100 cc of saline (which is between 1/3 and 1/2 cup fluid for those of us not used to the metric system), which wasn't enough to make me look like I had any kind of breast, but which was enough my make my chest muscles object. Before he started I said "It doesn't feel like there's any room," and he just smiled knowingly. It most definitely increased my discomfort level, but a muscle relaxer and some ibuprofen were all I really needed to manage it.
My chest is still very lumpy & bumpy, and and this stage I cannot visualize what the end result will be. I know that I have to be patient and not worry about what I look like at this point, but still...
I knew from talking with other mastectomy patients going through reconstruction that the tissue expanders are hard and unyielding - and they were not exaggerating. I have been having to sleep on my back ever since surgery, which is not what I like to do - I normally sleep on my side. But I don't think I'll be able to do that again until after the tissue expanders are replaced with the silicone implants.
Dr. Kushner
In the afternoon I had a follow-up with Dr. Kushner, mainly to discuss the pathology report. It turned out that both my breasts were what he described as "fertile breeding grounds for cancer." They had "proliferative fibrocystic changes", "sclerosing adenosis," "ductal hyperplasia," "radial scars," and some other stuff. The combination of all these things happening in each breast, in someone under 50, was, in his mind, cause for serious concern. Obviously there is no going back from the decisions I made, so in a practical sense it doesn't matter what the report says. But I do find comfort in the reassurance it gives me that I made the right choices for me.
Monday, March 28, 2011
Status Quo
Day 14 Post Op
Not much to report. Improvements seem to have reached a temporary plateau, so for the past few days I have felt pretty much the same. Which is "uncomfortable", but no worse. I am getting out and walking for about an hour most days, but at a slower than usual pace.
Tomorrow I have 2 more follow-up doctors' appointments: Doezie in the morning and Kushner in the afternoon. I hope to get permission to do more exercise, especially to start working on range of motion with my arms.
I made my post-surgical appointment with an oncologist, that will be next week. Given my pathology results, I'm hoping that he will just review my case and say "check back in 6 months or a year". But I don't want to make assumptions, because they have so often been wrong during this process!
Being Thankful, Part 4
This past weekend, for the first time since we got home from the hospital, Pete and I had to cook ourselves dinner. We had almost forgotten how (just kidding)! Today I offer our gratitude to Denise, Lynette, Rosemary, Martha, Elaine, Pam, Susie, Isabelle, Stuart and Mary Ann for signing up to be our Meal Train. And to Denise again, for being the one who organized it. We felt absolutely spoiled rotten.
Not much to report. Improvements seem to have reached a temporary plateau, so for the past few days I have felt pretty much the same. Which is "uncomfortable", but no worse. I am getting out and walking for about an hour most days, but at a slower than usual pace.
Tomorrow I have 2 more follow-up doctors' appointments: Doezie in the morning and Kushner in the afternoon. I hope to get permission to do more exercise, especially to start working on range of motion with my arms.
I made my post-surgical appointment with an oncologist, that will be next week. Given my pathology results, I'm hoping that he will just review my case and say "check back in 6 months or a year". But I don't want to make assumptions, because they have so often been wrong during this process!
Being Thankful, Part 4
This past weekend, for the first time since we got home from the hospital, Pete and I had to cook ourselves dinner. We had almost forgotten how (just kidding)! Today I offer our gratitude to Denise, Lynette, Rosemary, Martha, Elaine, Pam, Susie, Isabelle, Stuart and Mary Ann for signing up to be our Meal Train. And to Denise again, for being the one who organized it. We felt absolutely spoiled rotten.
Saturday, March 26, 2011
The Kindness of Strangers
Being Thankful, Part 3
It seems that breast cancer has touched everybody - either directly because it's happened to them, or indirectly because it's happened to someone they care about. I quickly learned that it can create an immediate bond between 2 people who were, until that moment, strangers. During the month prior to my surgery, I exchanged many long emails with a colleague of Pete's. We've never met, but she is just finishing her own breast cancer treatment, and when she heard of my diagnosis, she reached out and offered her support and the benefit of her experience. And it was a very big help to me. Another was a friend of a friend who has expertise in the tangled world of health insurance. He spent time not only on the phone with me, but on the phone with other contacts, to try to answer my questions about certain insurance issues. And then there was a neighbor, someone that I know very casually, but who immediately volunteered to bring us dinner one evening when she heard that I'd had surgery. And there were others - friends of friends - who were willing to share their stories and intimate details of breast cancer surgery with me.
So, I am thankful for the kindness of (former) strangers.
Show Us Your Bra
When Daria brought me the wonderful mastectomy camisoles that Amoena makes, she included a copy of their "Show Us Your Bra" calendar, which features wonderful works of art such as the following. It's called "Spontaneous ComBUSTion" and the artists are Helen Schaefer and Jane Martino:
It seems that breast cancer has touched everybody - either directly because it's happened to them, or indirectly because it's happened to someone they care about. I quickly learned that it can create an immediate bond between 2 people who were, until that moment, strangers. During the month prior to my surgery, I exchanged many long emails with a colleague of Pete's. We've never met, but she is just finishing her own breast cancer treatment, and when she heard of my diagnosis, she reached out and offered her support and the benefit of her experience. And it was a very big help to me. Another was a friend of a friend who has expertise in the tangled world of health insurance. He spent time not only on the phone with me, but on the phone with other contacts, to try to answer my questions about certain insurance issues. And then there was a neighbor, someone that I know very casually, but who immediately volunteered to bring us dinner one evening when she heard that I'd had surgery. And there were others - friends of friends - who were willing to share their stories and intimate details of breast cancer surgery with me.
So, I am thankful for the kindness of (former) strangers.
Show Us Your Bra
When Daria brought me the wonderful mastectomy camisoles that Amoena makes, she included a copy of their "Show Us Your Bra" calendar, which features wonderful works of art such as the following. It's called "Spontaneous ComBUSTion" and the artists are Helen Schaefer and Jane Martino:
Thursday, March 24, 2011
On The Road Again
Day 10 Post-Op
I've been given a medical OK to drive again. I was a little hesitant, because I still have to be careful how I move and have a limited range of motion, but Pete and I did some errands in town today and I drove - so I guess no more getting chauffeured around! I do have to use both hands to pull up the parking brake, though.
I've been given a medical OK to drive again. I was a little hesitant, because I still have to be careful how I move and have a limited range of motion, but Pete and I did some errands in town today and I drove - so I guess no more getting chauffeured around! I do have to use both hands to pull up the parking brake, though.
Wednesday, March 23, 2011
Bliss
Day 9 Post Op
I got to take my first shower since the operation - bliss......
Regarding medications: now that the drains are out, I can discontinue the antibiotics. As of yesterday, I'm also off the Percocet, but I'm still using the muscle relaxers.
My chest still feels like it's shot full of novocaine - the surface of the skin is numb. I'd read that it was normal for mastectomy patients to lose sensation, and that it usually returns (to some extent) over time.
Being Thankful, Part 2
I also had my first post-op visit with Dr. Kushner's office. I did not see the surgeon himself, but the surgical nurse who assisted in the operation checked things out and answered some questions (I always have a list of questions). I wasn't able to drive myself to these appointments, so thanks for Jeff and Rosemary for chauffeuring me about so Pete didn't have to take any more time off work.
I got to take my first shower since the operation - bliss......
Regarding medications: now that the drains are out, I can discontinue the antibiotics. As of yesterday, I'm also off the Percocet, but I'm still using the muscle relaxers.
My chest still feels like it's shot full of novocaine - the surface of the skin is numb. I'd read that it was normal for mastectomy patients to lose sensation, and that it usually returns (to some extent) over time.
Being Thankful, Part 2
I also had my first post-op visit with Dr. Kushner's office. I did not see the surgeon himself, but the surgical nurse who assisted in the operation checked things out and answered some questions (I always have a list of questions). I wasn't able to drive myself to these appointments, so thanks for Jeff and Rosemary for chauffeuring me about so Pete didn't have to take any more time off work.
Tuesday, March 22, 2011
Break Out the Champagne
Day 8 Post Op
The drains are out!!! Yeah! Had my second visit to Dr. Doezie's office, and he was very pleased with the way things are progressing. Fluid output from the Jackson-Pratt drains had dropped enough that he had no hesitation in removing them (a fairly painless process).
And tomorrow.... I get to take a SHOWER. I'm so excited!
Pathology Update
Dr. Kushner's PA called me back at the end of the day, and reported that my hormone receptor tests are negative. This is what I was hoping to hear! My expectations had been swinging from one extreme to the other. I started menopause very early, around age 37, was mostly done by around age 39, and was officially done by age 42 (officially means a year without menstruation). I never took HRT, so on one side I was certain that I couldn't have estrogen-sensitive tumors, because I was convinced there wasn't any left in my body. But I wasn't sure about progesterone, and the odds are very high that a given breast cancer IS hormone receptor positive, so sometimes I was certain that it WOULD be positive, and was mentally preparing myself for those results, too.
I can't be sure until I've met with an oncologist, but I think these results mean it's unlikely I'll need ongoing drug therapy.
The news is good enough, for now, that Pete rushed to the fridge for the slightly flat bottle of champagne he had opened for friends a couple of nights ago, and poured us a glass.
The drains are out!!! Yeah! Had my second visit to Dr. Doezie's office, and he was very pleased with the way things are progressing. Fluid output from the Jackson-Pratt drains had dropped enough that he had no hesitation in removing them (a fairly painless process).
And tomorrow.... I get to take a SHOWER. I'm so excited!
Pathology Update
Dr. Kushner's PA called me back at the end of the day, and reported that my hormone receptor tests are negative. This is what I was hoping to hear! My expectations had been swinging from one extreme to the other. I started menopause very early, around age 37, was mostly done by around age 39, and was officially done by age 42 (officially means a year without menstruation). I never took HRT, so on one side I was certain that I couldn't have estrogen-sensitive tumors, because I was convinced there wasn't any left in my body. But I wasn't sure about progesterone, and the odds are very high that a given breast cancer IS hormone receptor positive, so sometimes I was certain that it WOULD be positive, and was mentally preparing myself for those results, too.
I can't be sure until I've met with an oncologist, but I think these results mean it's unlikely I'll need ongoing drug therapy.
The news is good enough, for now, that Pete rushed to the fridge for the slightly flat bottle of champagne he had opened for friends a couple of nights ago, and poured us a glass.
Monday, March 21, 2011
Pathology Findings Delayed
Day 7 Post-Op
I have been anxiously waiting for the pathology report from my surgery. We already knew the first critical piece of information: that the lymph nodes were negative. That test is actually done during surgery, and Dr. Kushner was able to tell Pete the results as soon as he finished his part of the operation.
The next critical piece of information would be "does analysis of the tissue removed during surgery show anything unexpected?" In my case, I think the big question was whether or not my tumors were truly non-invasive, as was predicted by the biopsy, or did detailed analysis of the larger tissue sample show micro-invasions which the biopsy did not reveal?
The third critical piece of information, and the one I have been most worried about, is the result of certain hormone receptor tests. Two out of three breast cancers are hormone receptor-positive, meaning that they rely on estrogen and/or progesterone for growth. These types of tumors can appear in other parts of the body, not just the breasts, so even with a bi-lateral mastectomy, there is a chance that I will have to have drug therapy (such as tamoxifen or aromatase inhibitor drugs) if my tumors were positive for hormone receptors. Need I say that I really don't want to have to take these drugs? The other test is for a substance called HER2, but from what I've read, that relates more to invasive cancers - at this point, I haven't learned enough about this to report as to whether or not it is a concern in my case.
So, we knew that the lab reports would take 3-4 days after surgery. I had a message from Dr. Kushner last Friday afternoon, in which he said he had my labs and "they're all good". By the time I called back, his office was closed for the day, but all weekend I was assuming that my hormone receptor tests were negative and that I didn't have to worry about adjuvant drug therapy.
BUT, after getting a copy of the pathology report faxed to me today so I could look at it myself, and leaving 2 additional messages at the doctor's office, I found out that there has been a serious fuck-up. The pathology report I received seemed to confirm that the cancer was non-invasive and that the tested lymph nodes were all negative, and I suppose that's what Dr. Kushner was referring to when he said the report was "all good".
HOWEVER, it turned out that the pathology group ASSUMED the hormone receptor test was done at the time of the biopsy. They did not bother looking at that report, where they could have read for themselves the part where it says, in summary, that the core biopsy sample was too small to perform this test, and that it would need to be done after the tumor was excised. I don't know why Dr. Kushner didn't notice himself that this test was not part of the pathology report, because we discussed my concerns about this on more than one occasion. So, THE TEST HASN'T BEEN DONE!!! The PA (Physician's Assistant) from Dr. Kushner's office who returned my calls and who contacted the lab to find out when we could expect the test results reported that they said "Thanks for pointing this out to us," to which she replied "Actually, it was the patient who noticed." She tried to get the lab to say when they would have results, but all they would commit to is "soon."
Can you tell I'm furious? Lab tests which are critical in determining what, if any, drug therapy I need following my cancer surgery were not done. They were not done because the lab assumed someone else had done them. The lab did not look at prior reports which would have told them the tests had not been done. My surgeon, in reviewing the labs, did not notice that they had not been done. When this gross omission was pointed out to the lab, all they would promise is that they would do it "soon".
No matter how good the quality of care you are receiving is, there is still a burden on the patient to get information and make sure the right things happen. That's just the way it is.
On a More Amusing Note
My personal hygiene is rather restricted these days. Fortunately, lounging about the house and taking slow little walks does not exactly work up a sweat. I cannot shower or bathe yet because I still have my drains in and have unhealed incisions. So I use baby wipes to rub down most body parts, and hydrogen peroxide to clean the underarm where the lymph nodes were removed (there's a separate incision there).
I am blessed with very thick hair which can go almost a week without washing and still look the same (which for good or bad I have virtually no control over - it just does what it wants to). But on Sunday it was time for a wash. We have a marvelous big cast-iron tub on ball feet, so it was reasonably comfortable for me to kneel over it while Pete washed my hair using the hand-held shower attachment, and he couldn't resist photographing his work:
I have been anxiously waiting for the pathology report from my surgery. We already knew the first critical piece of information: that the lymph nodes were negative. That test is actually done during surgery, and Dr. Kushner was able to tell Pete the results as soon as he finished his part of the operation.
The next critical piece of information would be "does analysis of the tissue removed during surgery show anything unexpected?" In my case, I think the big question was whether or not my tumors were truly non-invasive, as was predicted by the biopsy, or did detailed analysis of the larger tissue sample show micro-invasions which the biopsy did not reveal?
The third critical piece of information, and the one I have been most worried about, is the result of certain hormone receptor tests. Two out of three breast cancers are hormone receptor-positive, meaning that they rely on estrogen and/or progesterone for growth. These types of tumors can appear in other parts of the body, not just the breasts, so even with a bi-lateral mastectomy, there is a chance that I will have to have drug therapy (such as tamoxifen or aromatase inhibitor drugs) if my tumors were positive for hormone receptors. Need I say that I really don't want to have to take these drugs? The other test is for a substance called HER2, but from what I've read, that relates more to invasive cancers - at this point, I haven't learned enough about this to report as to whether or not it is a concern in my case.
So, we knew that the lab reports would take 3-4 days after surgery. I had a message from Dr. Kushner last Friday afternoon, in which he said he had my labs and "they're all good". By the time I called back, his office was closed for the day, but all weekend I was assuming that my hormone receptor tests were negative and that I didn't have to worry about adjuvant drug therapy.
BUT, after getting a copy of the pathology report faxed to me today so I could look at it myself, and leaving 2 additional messages at the doctor's office, I found out that there has been a serious fuck-up. The pathology report I received seemed to confirm that the cancer was non-invasive and that the tested lymph nodes were all negative, and I suppose that's what Dr. Kushner was referring to when he said the report was "all good".
HOWEVER, it turned out that the pathology group ASSUMED the hormone receptor test was done at the time of the biopsy. They did not bother looking at that report, where they could have read for themselves the part where it says, in summary, that the core biopsy sample was too small to perform this test, and that it would need to be done after the tumor was excised. I don't know why Dr. Kushner didn't notice himself that this test was not part of the pathology report, because we discussed my concerns about this on more than one occasion. So, THE TEST HASN'T BEEN DONE!!! The PA (Physician's Assistant) from Dr. Kushner's office who returned my calls and who contacted the lab to find out when we could expect the test results reported that they said "Thanks for pointing this out to us," to which she replied "Actually, it was the patient who noticed." She tried to get the lab to say when they would have results, but all they would commit to is "soon."
Can you tell I'm furious? Lab tests which are critical in determining what, if any, drug therapy I need following my cancer surgery were not done. They were not done because the lab assumed someone else had done them. The lab did not look at prior reports which would have told them the tests had not been done. My surgeon, in reviewing the labs, did not notice that they had not been done. When this gross omission was pointed out to the lab, all they would promise is that they would do it "soon".
No matter how good the quality of care you are receiving is, there is still a burden on the patient to get information and make sure the right things happen. That's just the way it is.
On a More Amusing Note
My personal hygiene is rather restricted these days. Fortunately, lounging about the house and taking slow little walks does not exactly work up a sweat. I cannot shower or bathe yet because I still have my drains in and have unhealed incisions. So I use baby wipes to rub down most body parts, and hydrogen peroxide to clean the underarm where the lymph nodes were removed (there's a separate incision there).
I am blessed with very thick hair which can go almost a week without washing and still look the same (which for good or bad I have virtually no control over - it just does what it wants to). But on Sunday it was time for a wash. We have a marvelous big cast-iron tub on ball feet, so it was reasonably comfortable for me to kneel over it while Pete washed my hair using the hand-held shower attachment, and he couldn't resist photographing his work:
Sunday, March 20, 2011
Being Thankful
Day 6 Post Op
Yesterday morning (Saturday) I managed to join Pete in a modified version of our regular Saturday ritual - getting coffee and croissants from Jean-Paul's, then sitting on a bench overlooking Diver's Cove to have breakfast. Normally, we then go our separate ways for a walk - separate, because we have different ideas of what a "walk" should be. Pete refers to my pace as a "forced march" and I refer to his as a "stroll". But my current speed is perhaps "ambling". So we ambled to Crescent Bay Park, one of the prettiest little parks in Laguna, and a special spot for us because it is where we were married. Pete thinks our round trip was about a mile, but I think it was less. No matter. I did need to spend the rest of the day just resting, but this was another good step forward.
I continued to cut back on painkillers, and I think that in a day or two I will be off the Percocet entirely and just using the muscle relaxers. Output from my drains is less and less, and I am hoping that at my next doctor's visit, this coming Tuesday, I will be able to have them out.
Being thankful, Part 1
Throughout this experience there have been many, many, many circumstances and people I am thankful for, and I would like to start mentioning them. Not all at once, and not in any order of priority - except for the first one: Pete. I am certain that this has been as hard on him, if not harder, than it is on me. Being the caregiver and supportive spouse is a difficult, mostly unsung role. So much attention - from doctors, nurses, family, friends, even strangers - has been focused on me, and that love and support has given me so much. I honestly believe that his job in all this is harder than mine, and I am thankful that he does it so generously and unreservedly.
Yesterday morning (Saturday) I managed to join Pete in a modified version of our regular Saturday ritual - getting coffee and croissants from Jean-Paul's, then sitting on a bench overlooking Diver's Cove to have breakfast. Normally, we then go our separate ways for a walk - separate, because we have different ideas of what a "walk" should be. Pete refers to my pace as a "forced march" and I refer to his as a "stroll". But my current speed is perhaps "ambling". So we ambled to Crescent Bay Park, one of the prettiest little parks in Laguna, and a special spot for us because it is where we were married. Pete thinks our round trip was about a mile, but I think it was less. No matter. I did need to spend the rest of the day just resting, but this was another good step forward.
I continued to cut back on painkillers, and I think that in a day or two I will be off the Percocet entirely and just using the muscle relaxers. Output from my drains is less and less, and I am hoping that at my next doctor's visit, this coming Tuesday, I will be able to have them out.
Being thankful, Part 1
Throughout this experience there have been many, many, many circumstances and people I am thankful for, and I would like to start mentioning them. Not all at once, and not in any order of priority - except for the first one: Pete. I am certain that this has been as hard on him, if not harder, than it is on me. Being the caregiver and supportive spouse is a difficult, mostly unsung role. So much attention - from doctors, nurses, family, friends, even strangers - has been focused on me, and that love and support has given me so much. I honestly believe that his job in all this is harder than mine, and I am thankful that he does it so generously and unreservedly.
Friday, March 18, 2011
Big Progress
Post-Op Day 4
Two big events for today! I went back to Dr. Doezie's office so his assistant could remove the pain pump that was still attached to me when I left the hospital, and I managed a walk around the block. Also, I've been able to cut back a little bit on the other pain medication I've been taking - instead of taking 2 Percocet per dose, I find I'm OK with just 1. I'm also on muscle relaxers, because it's the incisions in the chest wall muscles and the process of stretching out those muscles to eventually accommodate an implant which causes the most discomfort (if I understand correctly what the doctors were telling me before surgery).
When I left the hospital I had 4 tubes coming out of my chest. The ones which were removed today were two very small ones, which were attached to some mysterious automatic pain relief delivery system. The tubes fed into a bulb-like object, which was in a bag that I had to carry about with me (usually draped around my neck when I moved about) and it was administering a local anesthetic to where my breasts used to be, keeping that area feeling numb.
I still have 2 tubes in my chest, for what are called Jackson Pratt drains. These are connected to bulbs which work with gentle suction to draw out body fluids such as blood and lymph from the surgery site, and they have to stay in place until the drainage falls below a certain level - I'm told usually 7-10 days. When I was in the hospital the nurses were emptying the drains every 4 hours or so - now Pete has the job of doing it twice a day.
After surgery, a huge Ace bandage had been wrapped around my chest, applying compression to the wounds, and it had become very uncomfortable: itching, and digging into the underside of my arm where the velcro ends overlapped. I was very happy to be able to leave the doctor's office without that on! Of course, that also means that I had my first look at what my chest looks like - it's a bit Frankenstein-ish, but that's to be expected. The important thing is that the incisions look like they are healing well.
What I am wearing is a special post-mastectomy camisole. I first heard about these from another breast cancer patient I had been corresponding with. Everything you wear after this type of surgery needs to be either button-up or step-into, because you can't raise your arms to pull even a loose-fitting t-shirt over your head. So I have one camisole which is a step-into, and the other zips-up. They have little pockets on the inside to hold the Jackson-Pratt drains, which is a convenient and comfortable way to deal with them. The drain bulbs can also be safety-pinned to whatever you are wearing. In the hospital, for example, they were pinned to the elegant, breezy hospital gown I wore, but in spite of the "safety" aspect, I managed to stab myself with the pin. It turns out that a good friend of a good friend is a rep for one of the companies which makes these camisoles, Amoena - so thank you VERY much, Daria, for going out of your way to get these to me - they feel great.
My second milestone for the day was taking a walk around the block with Martha and her exceptional labrador retriever, Chester. Chester is getting on in years, and is easily distracted from the w-a-l-k-i-n-g aspect of the outing, so I could just about keep up with him.
Two big events for today! I went back to Dr. Doezie's office so his assistant could remove the pain pump that was still attached to me when I left the hospital, and I managed a walk around the block. Also, I've been able to cut back a little bit on the other pain medication I've been taking - instead of taking 2 Percocet per dose, I find I'm OK with just 1. I'm also on muscle relaxers, because it's the incisions in the chest wall muscles and the process of stretching out those muscles to eventually accommodate an implant which causes the most discomfort (if I understand correctly what the doctors were telling me before surgery).
When I left the hospital I had 4 tubes coming out of my chest. The ones which were removed today were two very small ones, which were attached to some mysterious automatic pain relief delivery system. The tubes fed into a bulb-like object, which was in a bag that I had to carry about with me (usually draped around my neck when I moved about) and it was administering a local anesthetic to where my breasts used to be, keeping that area feeling numb.
I still have 2 tubes in my chest, for what are called Jackson Pratt drains. These are connected to bulbs which work with gentle suction to draw out body fluids such as blood and lymph from the surgery site, and they have to stay in place until the drainage falls below a certain level - I'm told usually 7-10 days. When I was in the hospital the nurses were emptying the drains every 4 hours or so - now Pete has the job of doing it twice a day.
After surgery, a huge Ace bandage had been wrapped around my chest, applying compression to the wounds, and it had become very uncomfortable: itching, and digging into the underside of my arm where the velcro ends overlapped. I was very happy to be able to leave the doctor's office without that on! Of course, that also means that I had my first look at what my chest looks like - it's a bit Frankenstein-ish, but that's to be expected. The important thing is that the incisions look like they are healing well.
What I am wearing is a special post-mastectomy camisole. I first heard about these from another breast cancer patient I had been corresponding with. Everything you wear after this type of surgery needs to be either button-up or step-into, because you can't raise your arms to pull even a loose-fitting t-shirt over your head. So I have one camisole which is a step-into, and the other zips-up. They have little pockets on the inside to hold the Jackson-Pratt drains, which is a convenient and comfortable way to deal with them. The drain bulbs can also be safety-pinned to whatever you are wearing. In the hospital, for example, they were pinned to the elegant, breezy hospital gown I wore, but in spite of the "safety" aspect, I managed to stab myself with the pin. It turns out that a good friend of a good friend is a rep for one of the companies which makes these camisoles, Amoena - so thank you VERY much, Daria, for going out of your way to get these to me - they feel great.
My second milestone for the day was taking a walk around the block with Martha and her exceptional labrador retriever, Chester. Chester is getting on in years, and is easily distracted from the w-a-l-k-i-n-g aspect of the outing, so I could just about keep up with him.
Thursday, March 17, 2011
I'm Back....
It's me posting again... I want to repeat what Pete has already said - that the many messages we've received (mostly via email) are much appreciated. Bearing in mind that I'm writing this not only for friends and family, but because perhaps one day another breast cancer patient will read it and find the details useful, I'm going to fill in some gaps about my surgery experience.
Firstly, if you had asked me even 24 hours ago if I thought I would be sitting at the computer, writing, I would have said "no". My day-by-day improvement has been significant.
Monday, March 14, 2011
Surgery day. I originally had a 3 pm start time, which I was not at all happy about. I knew I was unlikely to sleep well the night before, and that I would be awake early this day. The prospect of hanging about the house all day, unable to eat or even have a drink of water (everyone knows that you have to fast after midnight the day before going under general anesthetic, right?) was not one I thought I would cope with very well. But the surgeon's scheduler managed to get me moved up to 12:45 (thanks, Karen!). I was told to be at the hospital by 10 am because I needed to have a nuclear dye injected into the cancerous breast so that the surgeon could trace what are known as the "sentinal nodes" - the first lymph nodes serving that part of the body. These would have to be biopsied during the surgery to determine whether or not the cancer had spread. For a sentinal node biopsy, I only expected to have about 3 lymph nodes removed, which was important because it means that the risk of a lymphedema (swelling in the arm caused by removing many lymph nodes) complication was very small.
I woke up early, and had a long soak in the bathtub - the last one I'll be able to have for a while (the surgical incisions will need to be kept dry until healed). I'm the sort who never leaves the house without a water bottle in hand, so I was worried about how de-hydrated I would feel that day. We ran a humidifier in the bedroom the night before, and in addition to relaxing me, I hoped the bath would make me feel less parched. I was glad to have to check in at the hospital so early, because as part of the pre-op preparations I was given an IV which provided hydration so I didn't feel very thirsty once I was there.
As Pete mentioned, the surgery was late starting. I managed to stay fairly relaxed right up until 12:45 pm, when I realized that I should have been in the OR, but still hadn't seen my doctors. I was in a large open ward, with beds curtained off for some visual privacy. It was very busy when I arrived, and I could hear snippets of conversation around me. One man was telling his friends how he had just returned from a tour of duty in Afghanistan, only to discover he had cancer. Another man, who sounded much older and who did not speak english as his first language, was in trouble with the nurse because he admitted to drinking some water only 4 hours beforehand. Eventually it got quiet and I felt like I was the only patient left waiting. Pete was able to wait with me during this time - once I had undressed and had the IV and basic pre-op work done he was allowed to sit with me. Mostly we each just read to pass the time. Just prior to surgery (around 1:30 pm) Dr. Doezie, the plastic surgeon, arrived to draw incision lines on me, then the anesthesiologist turned up to introduce himself, then I was wheeled away on the gurney, and then... I was out before they got me to the elevator.
The next thing I felt was cold air blowing on my face from the oxygen mask helping me to wake up in Recovery. I was allowed to have a few ice chips, and it seemed to me that pretty soon after that I was being wheeled to my room. Pete joined me along the way, and I was coherent enough that the first thing I said to him was "were the sentinal nodes clear?" The answer, as expected, was "yes", but it was a relief to hear it as fact.
I was put in a private room which had a long, cushioned window-seat - big enough for Pete to sleep on, and I'm so happy we was able to stay in the room with me. As you might expect, I was completely helpless and unable to get out of bed, or even reach for the cup of ice chips by myself. A catheter had been inserted for the surgery to collect urine, so I didn't have to get up to go to the bathroom. It felt slightly uncomfortable at first, but I quickly reached the point where I didn't notice it.
During pre-op I had inflatable leg braces wrapped around my legs to help circulation - they are hooked up to a device which regularly inflates and deflates the wraps to prevent blood clots. Back in the room an automatic blood pressure cuff was also attached to me and it, along with the night nurse, was checking vital signs all night long. So don't expect to get much sleep the night after a surgery, what with the machines beeping to announce they are about to do something, then the wheezing and chugging while they do it, and the nurse taking temperatures and checking monitors. However, I felt pretty good that night - as long as I didn't move. I was content to doze in-between all the monitoring. Actually, since my pain medication was self-administered, I thought it was a good thing that I woke up regularly during the night to give myself a dose before the pain level got too high. The system is designed to prevent you from over-dosing - once you press the button, you cannot press it again for a certain period of time. The nurses and doctors encourage you to take advantage of the pain relief, and to NOT try to be tough about it. They told me that it's much harder to get under control once you let the pain level get too high, and I was happy to follow their orders.
Tuesday, March 15, 2011
It soon became obvious that I would need another night in the hospital. It wasn't unexpected. I didn't get out of Recovery and into my room until nearly 9 pm the night before, so to leave the next day was rather too optimistic.
The guidelines for being released were 1) I had to be able to walk on my own, 2) I had to be able to urinate once the catheter was removed, 3) I had to be able to keep at least liquids down, and 4) I had to be off the self-administered pain pump and onto tablets.
The nurse removed the catheter in the morning - I barely felt a thing. I tried walking - made 2 very slow circuits around the hallway with a nurse pushing my IV pole beside me - then failed my next test, because that made me nauseous (probably an after-effect of the anesthesia) and I threw up the very small portion of the liquid breakfast (vegetable soup) which I had tried to eat earlier.
But, since I had been up and walking I was allowed to have the leg braces off, and that was a good thing because they were itching and uncomfortable. The nurse got me a prescription for an anti-nausea medication. Between that and the fact that I hadn't really slept much the night before, I could hardly keep my eyes open, so I slept a lot that day. When Dr. Doezie visited me at lunchtime he said he would prescribe a sleeping pill and advised me to ask for it that night - he said it is hard, ironically, for patients to rest in the hospital, so he strongly recommended I take one so I could get a decent night's sleep.
Later in the afternoon I got through one of the other tests, being able to urinate. What a production it was to just get out bed! My IV pole had to go with me, and it's not just a little pole with a drip on it, it has monitors and stuff, so it was too much for me to push by myself. And I couldn't have opened the door to the bathroom by myself. In fact, I could barely manage pushing the button on the soap dispenser when I dutifully washed my hands after.
Soon after that I was taken off the pain pump and put on Percocet for pain. The anti-nausea meds were working, so I was able to eat at least some of my dinner. Then I took my sleeping pill and had a pretty good night's sleep.
Wednesday, March 16, 2011
Was in much better shape this morning. I actually wanted the breakfast they had such a hard time delivering (see Pete's earlier post). The surgical nurse from Dr. Kushner's visited me, and then Dr. Doezie, and then I got my release orders :)
We were home by lunchtime, and I parked myself on the sleeper sofa in front of the television to read or nap or watch TV.
Pete mentioned this already, but I want to say it again: my surgeons, and the nurses and staff at Mission Hospital were just terrific.
Firstly, if you had asked me even 24 hours ago if I thought I would be sitting at the computer, writing, I would have said "no". My day-by-day improvement has been significant.
Monday, March 14, 2011
Surgery day. I originally had a 3 pm start time, which I was not at all happy about. I knew I was unlikely to sleep well the night before, and that I would be awake early this day. The prospect of hanging about the house all day, unable to eat or even have a drink of water (everyone knows that you have to fast after midnight the day before going under general anesthetic, right?) was not one I thought I would cope with very well. But the surgeon's scheduler managed to get me moved up to 12:45 (thanks, Karen!). I was told to be at the hospital by 10 am because I needed to have a nuclear dye injected into the cancerous breast so that the surgeon could trace what are known as the "sentinal nodes" - the first lymph nodes serving that part of the body. These would have to be biopsied during the surgery to determine whether or not the cancer had spread. For a sentinal node biopsy, I only expected to have about 3 lymph nodes removed, which was important because it means that the risk of a lymphedema (swelling in the arm caused by removing many lymph nodes) complication was very small.
I woke up early, and had a long soak in the bathtub - the last one I'll be able to have for a while (the surgical incisions will need to be kept dry until healed). I'm the sort who never leaves the house without a water bottle in hand, so I was worried about how de-hydrated I would feel that day. We ran a humidifier in the bedroom the night before, and in addition to relaxing me, I hoped the bath would make me feel less parched. I was glad to have to check in at the hospital so early, because as part of the pre-op preparations I was given an IV which provided hydration so I didn't feel very thirsty once I was there.
As Pete mentioned, the surgery was late starting. I managed to stay fairly relaxed right up until 12:45 pm, when I realized that I should have been in the OR, but still hadn't seen my doctors. I was in a large open ward, with beds curtained off for some visual privacy. It was very busy when I arrived, and I could hear snippets of conversation around me. One man was telling his friends how he had just returned from a tour of duty in Afghanistan, only to discover he had cancer. Another man, who sounded much older and who did not speak english as his first language, was in trouble with the nurse because he admitted to drinking some water only 4 hours beforehand. Eventually it got quiet and I felt like I was the only patient left waiting. Pete was able to wait with me during this time - once I had undressed and had the IV and basic pre-op work done he was allowed to sit with me. Mostly we each just read to pass the time. Just prior to surgery (around 1:30 pm) Dr. Doezie, the plastic surgeon, arrived to draw incision lines on me, then the anesthesiologist turned up to introduce himself, then I was wheeled away on the gurney, and then... I was out before they got me to the elevator.
The next thing I felt was cold air blowing on my face from the oxygen mask helping me to wake up in Recovery. I was allowed to have a few ice chips, and it seemed to me that pretty soon after that I was being wheeled to my room. Pete joined me along the way, and I was coherent enough that the first thing I said to him was "were the sentinal nodes clear?" The answer, as expected, was "yes", but it was a relief to hear it as fact.
I was put in a private room which had a long, cushioned window-seat - big enough for Pete to sleep on, and I'm so happy we was able to stay in the room with me. As you might expect, I was completely helpless and unable to get out of bed, or even reach for the cup of ice chips by myself. A catheter had been inserted for the surgery to collect urine, so I didn't have to get up to go to the bathroom. It felt slightly uncomfortable at first, but I quickly reached the point where I didn't notice it.
During pre-op I had inflatable leg braces wrapped around my legs to help circulation - they are hooked up to a device which regularly inflates and deflates the wraps to prevent blood clots. Back in the room an automatic blood pressure cuff was also attached to me and it, along with the night nurse, was checking vital signs all night long. So don't expect to get much sleep the night after a surgery, what with the machines beeping to announce they are about to do something, then the wheezing and chugging while they do it, and the nurse taking temperatures and checking monitors. However, I felt pretty good that night - as long as I didn't move. I was content to doze in-between all the monitoring. Actually, since my pain medication was self-administered, I thought it was a good thing that I woke up regularly during the night to give myself a dose before the pain level got too high. The system is designed to prevent you from over-dosing - once you press the button, you cannot press it again for a certain period of time. The nurses and doctors encourage you to take advantage of the pain relief, and to NOT try to be tough about it. They told me that it's much harder to get under control once you let the pain level get too high, and I was happy to follow their orders.
Tuesday, March 15, 2011
It soon became obvious that I would need another night in the hospital. It wasn't unexpected. I didn't get out of Recovery and into my room until nearly 9 pm the night before, so to leave the next day was rather too optimistic.
The guidelines for being released were 1) I had to be able to walk on my own, 2) I had to be able to urinate once the catheter was removed, 3) I had to be able to keep at least liquids down, and 4) I had to be off the self-administered pain pump and onto tablets.
The nurse removed the catheter in the morning - I barely felt a thing. I tried walking - made 2 very slow circuits around the hallway with a nurse pushing my IV pole beside me - then failed my next test, because that made me nauseous (probably an after-effect of the anesthesia) and I threw up the very small portion of the liquid breakfast (vegetable soup) which I had tried to eat earlier.
But, since I had been up and walking I was allowed to have the leg braces off, and that was a good thing because they were itching and uncomfortable. The nurse got me a prescription for an anti-nausea medication. Between that and the fact that I hadn't really slept much the night before, I could hardly keep my eyes open, so I slept a lot that day. When Dr. Doezie visited me at lunchtime he said he would prescribe a sleeping pill and advised me to ask for it that night - he said it is hard, ironically, for patients to rest in the hospital, so he strongly recommended I take one so I could get a decent night's sleep.
Later in the afternoon I got through one of the other tests, being able to urinate. What a production it was to just get out bed! My IV pole had to go with me, and it's not just a little pole with a drip on it, it has monitors and stuff, so it was too much for me to push by myself. And I couldn't have opened the door to the bathroom by myself. In fact, I could barely manage pushing the button on the soap dispenser when I dutifully washed my hands after.
Soon after that I was taken off the pain pump and put on Percocet for pain. The anti-nausea meds were working, so I was able to eat at least some of my dinner. Then I took my sleeping pill and had a pretty good night's sleep.
Wednesday, March 16, 2011
Was in much better shape this morning. I actually wanted the breakfast they had such a hard time delivering (see Pete's earlier post). The surgical nurse from Dr. Kushner's visited me, and then Dr. Doezie, and then I got my release orders :)
We were home by lunchtime, and I parked myself on the sleeper sofa in front of the television to read or nap or watch TV.
Pete mentioned this already, but I want to say it again: my surgeons, and the nurses and staff at Mission Hospital were just terrific.
Wednesday, March 16, 2011
We're home!!
I'm glad to report that we're now back at home again. After a good night's sleep, helped by a sleeping pill, Lorraine woke this morning feeling way better than yesterday. The extra night in the hospital was really worth it.
This morning, the hospital catering service managed to deliver the wrong breakfast - twice! This, actually, was the only mistake Mission Hospital made during our stay. The nurses were excellent - professional yet friendly, and there seemed to be a constant stream of people passing through - both surgeons, an occupational therapist, a nutritionist, the hospital concierge, the nurse manager, the representative of the spiritual services, a lady to take the meal orders, and even an old gentleman whose sole job seemed to be to tape a new trash bag to the bed every morning. Overall, it's our view that the hospital does an excellent job.
So, mid-morning, the plastic surgeon came by. He was very pleased with way things looked. All his discharge conditions were met, so he signed the papers and, within an hour, we were out of there.
So now we're at home. Lorraine's napping and I'm trying to get caught up with work.
Life restarts.
Tuesday, March 15, 2011
Another day in hospital
I guess we thought it might be a little optimistic to think that Lorraine might be released from hospital the day after her surgery. She's improving, but everyone thinks it will make more sense for her to stay under professional care for another day. There are some fixed conditions that she has to meet before the doctors will discharge her, the chief among which is to move off IV-based pain medication (pain pump) to muscle relaxant and painkiller pills. We're not quite there yet. Today she's been walking (doing the IV shuffle) and has just finished a solid dinner. We're hoping that, with a good night's sleep and another day of rest, she'll be OK to go home tomorrow (Wednesday).
I've read all your lovely messages to her, and she's touched by them, as am I. Thank you so much for your caring and your support
If you'd like to post a comment, click on the title of the blog post (for this one "Another day in hospital" in large font), and your browser will open a window showing that post alone, and, below the post, a box where you can write and send your comment.
Monday, March 14, 2011
We're done - everything's OK!!
I'm writing from Lorraine's bedside in Mission Hospital. The surgery was a success, the doctors are happy and she's now resting comfortably, or as comfortably as is possible under the circumstances. She's hooked up to a forest of sensors and IVs and dispensers of pain medication and has breathing exercises to do, although they say "during waking hours", which may prove elusive.
The sentinel node biopsy was negative, which means that there's no evidence that the cancer has spread anywhere beyond the breast.
Kit, Pam, Stuart and Peter stayed with me all day. I can't thank them enough for spending some pretty tedious hours keeping my spirits up.
Recovery starts here!
Lorraine's surgery - interim update
Hi everyone,
A quick update to blog followers to let you know that Lorraine's surgery is going well. She was late into surgery, and is now into the second phase, conducted by the plastic surgeon. The general surgeon has been by to say that his phase - the mastectomy - went fine, and also that the sentinel node biopsy, which tests whether the cancer has spread outside the breast, was negative. That's really excellent news. It was very unlikely that the biopsy would be positive, but then it was very unlikely that Lorraine would contract breast cancer, so there was a nagging worry.
She has probably another hour or so in surgery, after which the surgeons will let me know how things went. I'll post another update then. She then spends an hour so in recovery, and if she comes out of the anaesthetic well, I'll get to see her then.
Sunday, March 13, 2011
Sunday afternoon
Hi everyone. I'll be posting updates to the blog, and also sending out e-mails, as soon and as often as there's news to share.
If you want to comment on a post, scroll down the bottom of the post and click on the link saying "0 comments", or however many there may be. A windows will open up where you can post a comment.
Thanks so much for all the messages of love and support. You cannot know how much they mean to us.
Pete
Saturday, March 12, 2011
DCIS: Ductal Carcinoma in Situ
Dear Friends,
I've decided that a blog is the easiest way to share with you what is happening to me. It is here for those who want to read it, and easily ignored by those who don't. Since I did not start this at the beginning of my breast cancer journey (even now, it sounds unreal to refer to myself as a cancer patient), this first posting will be LONG. I will begin with the most recent status, then backtrack.
Saturday, March 12, 2011
I will be having a bi-lateral mastectomy at Mission Hospital in Mission Viejo this coming Monday, the 14th. The surgery will include the beginning of the reconstruction process, and will therefore require 2 surgeons: Dr. Kenneth Kushner, who will be performing the mastectomy, and Dr. Allen Doezie, who will be doing the reconstruction. The first phase of the reconstruction involves inserting what is called a "tissue expander" - think of it as a partially inflated balloon. This is placed underneath the muscle of the chest wall and gradually filled up (over a period of weeks) with saline to stretch the muscle and skin to make room for the final breast implant.
The surgery start time is 12:30 pm, and I'm told it will take about 5 hours. I hope to only spend one night in the hospital, although when I am released will be determined by both my doctors deciding I am fit to go home, and me deciding I feel well enough to do so. Depending on the type of room I am given after surgery, we've been told that Pete might be able to stay overnight with me, which makes us both happier.
Wednesday, March 9, 2011
Had a "Bye Bye Boobs" party with some of my girlfriends. In spite of the scary and serious nature of my upcoming surgery, I could not get this alluringly alliterative phrase out of my mind: Bye Bye Boobs. So I decided a Girls' Night was required. It was a gathering of female friendship, a toast to early diagnosis, and a celebration of having health insurance (although we still expect our out-of-pocket expenses to be over $10,000). Everyone brought something - we had dinner, drinks, and even a little dancing. Many thanks to the elves who cleaned up so that at the end of the evening all I had to do was rest my weary feet while having a last glass of champagne.
Earlier in the day I had my final pre-op doctor's appointment, this one with Dr. Kushner. It was primarily a chance for me to ask questions (of course I had a list), and for him to confirm that I was sure of my decisions. Pete went with me - it was his chance to get to feel as confident with this surgeon as I do. He had been inclined towards me choosing Dr. West, but that's largely because he was part of the consult when I met with Dr. West, but hadn't been there when I had my first visit with Dr. Kushner.
Tuesday, March 8, 2011
I attempted to go to the twice-monthly breast cancer support group meeting at the Women's Wellness Center, but when I turned up, the place was deserted. A night worker found me wandering around and made a phone call, and a few minutes later Susann called me back - I had the wrong night. The meeting had been on Monday. Frustrated more by the waste of time driving down there and back than anything else, I drove home again to prepare for the Girls Night the next evening. I hadn't felt a desperate need to unburned myself at a support group - I've done nothing but read, talk, and write about all this for the past month. But I did think it would be comforting, a few days before the surgery, to be around other women who had gone, or were going through, this.
Monday, March 7, 2011
Today I had my pre-op appointment with the plastic surgeon, Dr. Doezie. I signed about 42 pages of consent forms, then we had a long question and answer session, then photographs of my breasts were taken.
Tuesday, March 1, 2011
I've finally made my decisions: bi-lateral mastectomy with reconstruction, using Dr. Kushner and Dr. Doezie, with surgery at Mission Hospital. In the end, I believed that the quality of the surgeons at both places I was considering was excellent, but it is more convenient to be treated at Mission Hospital, and I felt that there was a quieter, more personal atmosphere at their offices than at the other place. But as soon as I made the calls to get the surgery schedule, my anxiety level spiked. I wanted to call back and cancel, to say I'd changed my mind. I felt something I rarely feel: truly scared.
To someone who has not been through this process, it no doubt seems extreme that I started with a diagnosis of Stage 0 cancer - not even a palpable lump yet - and ended with a treatment that involves cutting off both my breasts. Hell, I HAVE been through this process and it seems extreme to me. But I did not reach this point easily or without a great deal of thought and research - it has been a 3 week long, all-consuming process. Deciding to have a mastectomy on the cancerous breast was the easy and obvious part. In the majority of cases, the treatment for DCIS is either lumpectomy followed by radiation, or mastectomy. Both treatments are considered to be equally effective. However, it was obvious almost from my first meeting with Dr. Kushner that the amount of tissue which would need to be removed during a lumpectomy - relative to the size of my breast - would leave me with almost no breast at all. DCIS grows in the milk ducts, so although it does not form lumps big enough to be felt, it can still affect a large portion of the breast. In my case, the MRI showed an almost 1" length of tissue affected. The MRI also showed a couple of other areas of concern, and had I been adamant about a lumpectomy rather than mastectomy, those areas would have required an MRI-guided biopsy. There was just no reason to go down that road. And finally, remember that the pathology report from the biopsy indicated the cancer was "high nuclear grade with focal necrosis", meaning it was an aggressive form.
Why the left breast as well? It was an accumulation of less compelling reasons, but ones which added up. The bottom line was that there was no physical or emotional advantage to me to keeping it, and there is a physical and emotional advantage to removing it. One you have cancer in one breast, your odds of it occurring in the other breast increase. The statistics on this vary, but I had 2 different doctors say to me that they can be as high as double the risk of someone who has not had breast cancer. Breast cancer patients who do not have bi-lateral mastectomies are advised to have mammograms and screening every 6 months because of this increased chance of cancer. And the risk increases over time - since I am only 48, I hope to have a lot of years ahead of me, and I do not want to live those years knowing that for every one that passes, my chance of cancer in my remaining breast is growing stronger.
Secondly, part of my surgery will be what is called a sentinel node biopsy. This means that the surgeon injects a dye into the breast with cancer and traces it to find the first lymph nodes serving that part of the body. These (usually about 3) are removed and biopsied to determine whether or not the cancer has spread. This is different from what is called axillary node biopsy, where many more lymph nodes are removed - it is the axillary node removal issue which has been in the press recently, since newly published medical studies have called into question whether it really benefits the patient. But, even removing just the sentinel nodes compromises your lymph system in your arm on that side. By removing the left breast pre-emptively, I can avoid the possibility of having to have lymph nodes removed on that side in future.
And finally, I will end up with better cosmetic results. Which brings me to the decision about reconstruction. This one I had a very, very hard time with. One day I would decide to have no reconstruction, the next day I would decide to have immediate reconstruction, and the third day I would decide I couldn't decide - delayed reconstruction was an option (mastectomy now, reconstruction at some later time, if I decided I wanted it). God, I sound like I'm building a bridge, don't I?
At first I was strongly resistant to having reconstruction. But then I thought: if I had a melanoma on my face, and removing it would leave me badly disfigured, I would not think twice about having plastic surgery to repair the disfigurement. I finally realized that because it was BREASTS that were requiring plastic surgery I was confusing the core decision. I asked myself, "Do I care what I look like?" And the answer is "Yes."
On the days when I thought I would not have reconstruction work done, I also decided that I would wear prosthetic breasts inside a mastectomy bra out in public. I did not want to parade my completely flat chest to announce to everyone who saw me that I was a breast cancer survivor. And I sure as hell didn't want to spend the rest of my life wearing floral blouses with ruffles to hide the fact that I had no breasts. But I also realized that every single time I strapped on that bra and stuffed a rubber boob into it, I would hate it. I realized that if my appearance mattered enough to me to wear external prosthetic breasts, I might as well make it easier on myself and wear them internally - it will look better, too.
This decision is not about preserving my femininity or sense of self worth - I learned long, long ago that my breasts have nothing to do with that. It's simply, for me, the less unpleasant of the two choices I have. At this point, I want to say that I have never in my life been more grateful for small breasts than I am now. Breast reconstruction does not look the same as a natural breast, or an augmented breast. But it is certainly easier for the plastic surgeon to get good results with smaller breasts, and mine are going to remain small (yes, I am resisting the temptation to find out what power a D-cup can wield over men).
And on the bright side: I shouldn't ever have to wear a bra again!
Monday, February 28, 2011
Which surgical team to use? Arrrggghhh! Patients have these hugely important, life-altering decisions to make when choosing doctors, and very little actual information to work with. From everything I've been able to learn, though, both Dr. West at the Orange County Breast Care & Imaging Center and Dr. Kushner with Saddleback Valley Surgical Medical Group are outstanding surgeons and I feel that I'll be getting great care whichever one I decide upon.
Thursday, February 24, 2011
Pete came with me today to my consultation with Dr. West at the Orange County Breast Care & Imaging Center in Orange. My first impression of the place, which had been emphatically and enthusiastically recommended to me by Kit (a friend and breast cancer survivor who had her second opinion done there), was that it was like waiting for a table at the Cheesecake Factory. There is a line in the floor as you approach the registration desk with words to the effect of "please wait here for next available agent." When it was my turn I was handed the usual enormous stack of paperwork, and a PAGER. No, I mis-remember. I didn't get the pager at first, because they had run out of them. I went off to find a corner of the huge and crowded waiting room to start on the forms, and a little later someone came over to hand me a pager. To be fair, they also had a volunteer come introduce herself and give me a folder of information and resources about breast cancer and offer her assistance.
Once we got beyond the waiting room, though, the atmosphere was much different. Pete and I both liked Dr. West a lot. After his initial examination and very brief review of my case, he seemed to think that mastectomy was the right decision, but he did say that it would be another week before their tumor board was able to give all my records a full review. They had requested the last 3 mammogram films & reports I'd had, along with the MRI and the pathology report and tissue slides from the biopsy.
Wednesday, February 23, 2011
Today I had an appointment with Dr. Nolan, another plastic surgeon I'm considering using. He has a terrific nurse working for him, very warm and welcoming. I was considerably less traumatized by this plastic surgery consult than I was by the first one, but still found it hard.
Thursday, February 17, 2011
I had my consultation with Dr Doezie today - the plastic surgeon on the tumor board at Mission Hospital, and the one recommended to me by Dr. Kushner. It was considerably more traumatic than I thought it would be. Now that I know more about breast implants than I ever wanted to, I am even more horrified and saddened that so many women do this to themselves voluntarily. Prior to my visit I had looked at Dr. Doezie's website, where he has posted before & after photographs of his reconstruction work. I had naively thought that reconstructed breasts would look like augmented breasts (in the dressing room at my yoga studio I've seen a lot of boob jobs in all their naked, gravity-defying glory), so I was at least able to get through the first shock of what reconstruction looks like in the privacy of my own home, with only the computer to witness my reaction. The basic shape seems to be the same in augmentation and reconstruction, I just hadn't thought about the scarring that happens during reconstruction. Of course it makes sense, incisions to remove a breast are going to be different than incisions to insert an implant. And then there's the nipple/aureola issue. After a mastectomy, you don't have them anymore. The nipple, too, can be reconstructed by a plastic surgeon, and the areola tattooed on, but I don't think I would have that done if I decide on reconstruction. For one thing, one small benefit to reconstruction is that you can give up wearing bras - and I hate wearing bras, they are uncomfortable. So I certainly wouldn't to have to wear one just to cover up a fake nipple. And if I decide to have the implants, and if I have anything tattooed on them, it would be something a lot more interesting than a fake areola.
I made it through the consult with a stiff upper lip, but after Dr. Doezie left the room and the nurse was with me, I started to break down. Then the nurse started to cry, too. I was actually quite touched by her sympathy. They didn't even have a damn box of tissues in the exam room! I guess most patients visiting plastic surgeons are happy to be there because they're changing something they want changed, so maybe there's not a lot of tears.
I got a grip on myself as best I could, then I left and sat in my car and cried. It wasn't really about the plastic surgery, it was just the proverbial straw. It was the moment that it all really hit me and I realized that this was a serious thing, and I was going to have to do some things I didn't want to do.
Friday, February 11, 2011
Today was the tumor board review. Those of us with cases being reviewed gathered in a conference room at the Women's Wellness Center at Mission Hospital, along with a volunteer who is also a breast cancer survivor, and who is there to answer questions and be a calming influence. I was encouraged to bring Pete along to this, so I did. One by one we were each called into an examining room, where we stripped down to the waist and then had 9 doctors crowd in to look at us while one or more of them did necessary poking and prodding. I was the last one in our group of 4 to be examined. After all of us had had our turn, we each went away with our respective surgeons to talk about what the board's opinions were.
This was the first time that Pete had met Dr. Kushner, and of course it was my first meeting with him since the MRI, so there was important new information to discuss. The MRI had indicated 2 other ares of concern in the right breast. If I wanted a BCT (Breast Conserving Treatment) - meaning a lumpectomy instead of mastectomy - then those areas would have to be checked using an MRI-guided biopsy. The MRI also showed that the cancer at the original biopsy site seemed to be about 1.5 cm long (about .75 inches). To do a lumpectomy, they would need to remove an additional 1 cm of clear tissue surrounding the cancer, meaning the amount of tissue being removed would be 1.5" long by about 1" wide - and that's just the original site. After explaining this, he asked me if I had any ideas about which treatment course I would want. I thought for just a moment, and said "I think mastectomy." Then Dr. Kushner said "To be honest, that's what the tumor board thinks is the best course of treatment."
The discussion then moved on to whether or not I would remove the left breast, and I asked about testing for the BRCA mutation. It turns out that this not something done automatically, or without serious consideration. I need to have an appointment with a genetic counselor before an order could be written. They found time for me to meet with her later this same day.
By the time I returned for the genetic appointment, my 5th visit to this medical building in 4 days, it had begun to feel, in a strange way, like a refuge. Outside of the people there, Pete was the only one I'd told. Outside, I was still pretending that nothing was wrong, But inside the Women's Wellness Center, they knew. They knew what needed to be done. They knew that, now, I was one of "them" - a breast cancer victim.
Thursday, February 10, 2011
Met with Dr. Kushner at Saddleback Valley Surgical Medical Group. We had an hour-long consultation, and I liked him. He reassured me that this type of cancer is very treatable, that the survival rate is almost 100% when it's caught and treated this early. He said the next step was to get an MRI, and that he would like to present me and my case at the weekly tumor board meeting, which would be happening tomorrow. His office pushed through the authorization for the MRI and arranged for a tech to stay late that day to fit me in, so I went home to try to get some work done, then came back at the end of the day for the MRI.
The MRI device was not as claustrophobic and I had feared it would be - it was shaped like a gargantuan donut, and only the body part to be scanned is inside the machine - my head and feet were sticking out. It is, however, so noisy that they gave me earplugs, and headphones over that (with my choice of music). The headphones also allowed the tech to talk to me - she gave me regular updates about how the time was proceeding. But the only way I could communicate with her was by squeezing a panic button, and she told me that the only good reason to squeeze the panic button was if I thought I was going into anaphylactic shock from the dye they inject part way through the scan. The scan was to take 32 minutes and it was ABSOLUTELY critical that I did not move ONE SINGLE MUSCLE. I had to be face down for this, but thank god they had a quite comfortable upper body cradle designed just for this purpose - not at all like the tortuous biopsy table. However, as soon as she told me to relax and just breath normally, I felt short of breath and desperately wanted to take deep lungfuls of air. But, I "passed" the test by staying still enough that they got the scan they needed.
Wednesday, February 9, 2011
My friend Stuart called this afternoon, just as I was leaving to do some errands. I spent some time complaining to him about the insurance hell I'd been through on Monday and how I didn't really think the biopsy had been necessary, and that the next time I was told I needed a biopsy I was going to just wait 6 months and do another mammogram to see if anything had changed before I rushed off and had a $4,000 procedure done for nothing. Ironic, isn't it?
As I was driving down the hill, my cell phone rang. Honestly, I never use the phone while driving, so I just made a mental note to check messages when I got to my first stop. I did my first errand, having already forgotten that I'd had a phone call. When I got back into my car, I remembered, and found a message from Dr. Breiterman, saying he had my biopsy results and would I call him back to discuss them. Right then, I knew. We do, don't we? If the news is good, they tell you so on voicemail "Hello, this is Dr. Breiterman, just wanted to let you know that I got your lab results and, as I thought, it was nothing to worry about." If the news is bad, they ask you to call them back to discuss the results.
So I called, and I became a cancer patient. He told me the next step was to probably get an MRI, and that he had already called my OB/GYN doctor with the results so their office could arrange the test for me. Needless to say, I ignored the rest of my errands and rushed home to start working on getting that appointment. My OB/GYN's office was, in fact, thoroughly useless in this matter, and after being transferred to a voicemail system to leave a woeful message I though to myself "this is not the doctor I need to be seeing next". So I called Susann, the Nurse Navigator at the Women's Wellness Center, and asked her who to call next. She referred me to the surgical group their center works with a lot - Saddleback Valley Surgical Medical Group - and I called them. I felt that as soon as I said "breast cancer" their receptionist kicked my case into High Priority - she got me an appointment with Dr. Kushner the next morning.
Tuesday, February 8, 2011
This afternoon I had a stereotactic core biopsy. When I arrived at the Women's Wellness Center at the Mission Viejo Hospital complex, a nurse was already waiting to guide me through the process. That was the first time I sensed that I had crossed a certain line - not just an impatient customer waiting for a routine mammogram, but a patient with a potentially serious illness. I spent a few minutes with Susann, who is a Nurse Navigator. Her job is "to work with you and your physician from the time of your biopsy throughout your entire treatment, including surgery, chemotherapy, radiation therapy, and beyond." When told me how the biopsy would be performed and handed me booklets about breast cancer treatment, saying "Don't read anything into this - I don't know anything you don't already know, we just give this to all biopsy patients."
Dr. Breiterman was the radiologist performing the procedure - he reviewed the films with me, and discussed the procedure and why it was being done. Only tiny specks of calcifications could be seen, and he told me he was 90% sure it was just vascular calcifications, which do happen as women age. I thought "OK, no problem".
The biopsy table is just that - a flat table with a hole in. You lie face-down, with the breast to be biopsied hanging through the hole and your head twisted to one side, flat on the table, with your opposite arm bent up under the shoulder, to sort-of tilt the biopsy breast downwards. The table is then raised, and the doctor & nurse work underneath the table. There was only mild discomfort with the biopsy procedure itself, but what was agonizing was what it did to my neck. I'm not really sure, but it seemed the procedure took about 20 minutes, and I was seriously beginning to wonder how much longer I could stand it. When it was over and I was allowed to sit up again, I literally could not move my head - my neck had completely frozen. I had to sit with an icepack on it for a while before I could make even slight movements.
The procedure done, I came home and Googled "vascular calcifications" and become more concerned about a tenuous connection between that condition and heart problems (my father died of a heart attack at 56) than I was about breast cancer.
Monday, February 7, 2011
Today was insurance hell day. I had been out of town the week before on work, and not in a position to spend a lot of time on the phone sorting out personal matters. So I hadn't had a chance to check-up on what exactly my insurance policy covered. I spent the day being ping-ponged between the Women's Wellness Center at the Mission Viejo Hospital, where the procedure would be performed, various departments at Mission Hospital, various representative of my insurance company, and assorted other radiology groups. Truly, this should be the subject of a whole other blog, and I will not dwell on it here.
But I mention insurance hell, because it was so hard to figure out what would be covered and what it would cost me ($4,000) that at one point I considered not having the biopsy done. My little breasts are packed with dense, fibrous tissue and I've had to have "special view" mammograms and an ultrasound in the past. It's true that those tests did not indicate a biopsy should be done, but with those false alarms in my past, I really thought this radiologist was being overly cautious. I was a little concerned - how can you not be? - but not much.
Thursday, January 27, 2011
I went in for my "special view" mammogram. I wasn't too concerned, having been through this process before. There was a long wait for the mammogram, then a short wait while the radiologist looked at it and decided I needed an ultrasound (still wasn't concerned, I've also been through this part before), and then a really long wait for the ultrasound. What I didn't expect was that the radiologist recommended a stereotactic core biopsy.
Monday, January 17, 2011
I went in for my annual-ish mammogram (it had been 14 or 15 months since the prior one). A few days later I got a letter saying I should go back for a "special view" mammogram.
I've decided that a blog is the easiest way to share with you what is happening to me. It is here for those who want to read it, and easily ignored by those who don't. Since I did not start this at the beginning of my breast cancer journey (even now, it sounds unreal to refer to myself as a cancer patient), this first posting will be LONG. I will begin with the most recent status, then backtrack.
Saturday, March 12, 2011
I will be having a bi-lateral mastectomy at Mission Hospital in Mission Viejo this coming Monday, the 14th. The surgery will include the beginning of the reconstruction process, and will therefore require 2 surgeons: Dr. Kenneth Kushner, who will be performing the mastectomy, and Dr. Allen Doezie, who will be doing the reconstruction. The first phase of the reconstruction involves inserting what is called a "tissue expander" - think of it as a partially inflated balloon. This is placed underneath the muscle of the chest wall and gradually filled up (over a period of weeks) with saline to stretch the muscle and skin to make room for the final breast implant.
The surgery start time is 12:30 pm, and I'm told it will take about 5 hours. I hope to only spend one night in the hospital, although when I am released will be determined by both my doctors deciding I am fit to go home, and me deciding I feel well enough to do so. Depending on the type of room I am given after surgery, we've been told that Pete might be able to stay overnight with me, which makes us both happier.
Wednesday, March 9, 2011
Had a "Bye Bye Boobs" party with some of my girlfriends. In spite of the scary and serious nature of my upcoming surgery, I could not get this alluringly alliterative phrase out of my mind: Bye Bye Boobs. So I decided a Girls' Night was required. It was a gathering of female friendship, a toast to early diagnosis, and a celebration of having health insurance (although we still expect our out-of-pocket expenses to be over $10,000). Everyone brought something - we had dinner, drinks, and even a little dancing. Many thanks to the elves who cleaned up so that at the end of the evening all I had to do was rest my weary feet while having a last glass of champagne.
Earlier in the day I had my final pre-op doctor's appointment, this one with Dr. Kushner. It was primarily a chance for me to ask questions (of course I had a list), and for him to confirm that I was sure of my decisions. Pete went with me - it was his chance to get to feel as confident with this surgeon as I do. He had been inclined towards me choosing Dr. West, but that's largely because he was part of the consult when I met with Dr. West, but hadn't been there when I had my first visit with Dr. Kushner.
Tuesday, March 8, 2011
I attempted to go to the twice-monthly breast cancer support group meeting at the Women's Wellness Center, but when I turned up, the place was deserted. A night worker found me wandering around and made a phone call, and a few minutes later Susann called me back - I had the wrong night. The meeting had been on Monday. Frustrated more by the waste of time driving down there and back than anything else, I drove home again to prepare for the Girls Night the next evening. I hadn't felt a desperate need to unburned myself at a support group - I've done nothing but read, talk, and write about all this for the past month. But I did think it would be comforting, a few days before the surgery, to be around other women who had gone, or were going through, this.
Monday, March 7, 2011
Today I had my pre-op appointment with the plastic surgeon, Dr. Doezie. I signed about 42 pages of consent forms, then we had a long question and answer session, then photographs of my breasts were taken.
Tuesday, March 1, 2011
I've finally made my decisions: bi-lateral mastectomy with reconstruction, using Dr. Kushner and Dr. Doezie, with surgery at Mission Hospital. In the end, I believed that the quality of the surgeons at both places I was considering was excellent, but it is more convenient to be treated at Mission Hospital, and I felt that there was a quieter, more personal atmosphere at their offices than at the other place. But as soon as I made the calls to get the surgery schedule, my anxiety level spiked. I wanted to call back and cancel, to say I'd changed my mind. I felt something I rarely feel: truly scared.
To someone who has not been through this process, it no doubt seems extreme that I started with a diagnosis of Stage 0 cancer - not even a palpable lump yet - and ended with a treatment that involves cutting off both my breasts. Hell, I HAVE been through this process and it seems extreme to me. But I did not reach this point easily or without a great deal of thought and research - it has been a 3 week long, all-consuming process. Deciding to have a mastectomy on the cancerous breast was the easy and obvious part. In the majority of cases, the treatment for DCIS is either lumpectomy followed by radiation, or mastectomy. Both treatments are considered to be equally effective. However, it was obvious almost from my first meeting with Dr. Kushner that the amount of tissue which would need to be removed during a lumpectomy - relative to the size of my breast - would leave me with almost no breast at all. DCIS grows in the milk ducts, so although it does not form lumps big enough to be felt, it can still affect a large portion of the breast. In my case, the MRI showed an almost 1" length of tissue affected. The MRI also showed a couple of other areas of concern, and had I been adamant about a lumpectomy rather than mastectomy, those areas would have required an MRI-guided biopsy. There was just no reason to go down that road. And finally, remember that the pathology report from the biopsy indicated the cancer was "high nuclear grade with focal necrosis", meaning it was an aggressive form.
Why the left breast as well? It was an accumulation of less compelling reasons, but ones which added up. The bottom line was that there was no physical or emotional advantage to me to keeping it, and there is a physical and emotional advantage to removing it. One you have cancer in one breast, your odds of it occurring in the other breast increase. The statistics on this vary, but I had 2 different doctors say to me that they can be as high as double the risk of someone who has not had breast cancer. Breast cancer patients who do not have bi-lateral mastectomies are advised to have mammograms and screening every 6 months because of this increased chance of cancer. And the risk increases over time - since I am only 48, I hope to have a lot of years ahead of me, and I do not want to live those years knowing that for every one that passes, my chance of cancer in my remaining breast is growing stronger.
Secondly, part of my surgery will be what is called a sentinel node biopsy. This means that the surgeon injects a dye into the breast with cancer and traces it to find the first lymph nodes serving that part of the body. These (usually about 3) are removed and biopsied to determine whether or not the cancer has spread. This is different from what is called axillary node biopsy, where many more lymph nodes are removed - it is the axillary node removal issue which has been in the press recently, since newly published medical studies have called into question whether it really benefits the patient. But, even removing just the sentinel nodes compromises your lymph system in your arm on that side. By removing the left breast pre-emptively, I can avoid the possibility of having to have lymph nodes removed on that side in future.
And finally, I will end up with better cosmetic results. Which brings me to the decision about reconstruction. This one I had a very, very hard time with. One day I would decide to have no reconstruction, the next day I would decide to have immediate reconstruction, and the third day I would decide I couldn't decide - delayed reconstruction was an option (mastectomy now, reconstruction at some later time, if I decided I wanted it). God, I sound like I'm building a bridge, don't I?
At first I was strongly resistant to having reconstruction. But then I thought: if I had a melanoma on my face, and removing it would leave me badly disfigured, I would not think twice about having plastic surgery to repair the disfigurement. I finally realized that because it was BREASTS that were requiring plastic surgery I was confusing the core decision. I asked myself, "Do I care what I look like?" And the answer is "Yes."
On the days when I thought I would not have reconstruction work done, I also decided that I would wear prosthetic breasts inside a mastectomy bra out in public. I did not want to parade my completely flat chest to announce to everyone who saw me that I was a breast cancer survivor. And I sure as hell didn't want to spend the rest of my life wearing floral blouses with ruffles to hide the fact that I had no breasts. But I also realized that every single time I strapped on that bra and stuffed a rubber boob into it, I would hate it. I realized that if my appearance mattered enough to me to wear external prosthetic breasts, I might as well make it easier on myself and wear them internally - it will look better, too.
This decision is not about preserving my femininity or sense of self worth - I learned long, long ago that my breasts have nothing to do with that. It's simply, for me, the less unpleasant of the two choices I have. At this point, I want to say that I have never in my life been more grateful for small breasts than I am now. Breast reconstruction does not look the same as a natural breast, or an augmented breast. But it is certainly easier for the plastic surgeon to get good results with smaller breasts, and mine are going to remain small (yes, I am resisting the temptation to find out what power a D-cup can wield over men).
And on the bright side: I shouldn't ever have to wear a bra again!
Monday, February 28, 2011
Which surgical team to use? Arrrggghhh! Patients have these hugely important, life-altering decisions to make when choosing doctors, and very little actual information to work with. From everything I've been able to learn, though, both Dr. West at the Orange County Breast Care & Imaging Center and Dr. Kushner with Saddleback Valley Surgical Medical Group are outstanding surgeons and I feel that I'll be getting great care whichever one I decide upon.
Thursday, February 24, 2011
Pete came with me today to my consultation with Dr. West at the Orange County Breast Care & Imaging Center in Orange. My first impression of the place, which had been emphatically and enthusiastically recommended to me by Kit (a friend and breast cancer survivor who had her second opinion done there), was that it was like waiting for a table at the Cheesecake Factory. There is a line in the floor as you approach the registration desk with words to the effect of "please wait here for next available agent." When it was my turn I was handed the usual enormous stack of paperwork, and a PAGER. No, I mis-remember. I didn't get the pager at first, because they had run out of them. I went off to find a corner of the huge and crowded waiting room to start on the forms, and a little later someone came over to hand me a pager. To be fair, they also had a volunteer come introduce herself and give me a folder of information and resources about breast cancer and offer her assistance.
Once we got beyond the waiting room, though, the atmosphere was much different. Pete and I both liked Dr. West a lot. After his initial examination and very brief review of my case, he seemed to think that mastectomy was the right decision, but he did say that it would be another week before their tumor board was able to give all my records a full review. They had requested the last 3 mammogram films & reports I'd had, along with the MRI and the pathology report and tissue slides from the biopsy.
Wednesday, February 23, 2011
Today I had an appointment with Dr. Nolan, another plastic surgeon I'm considering using. He has a terrific nurse working for him, very warm and welcoming. I was considerably less traumatized by this plastic surgery consult than I was by the first one, but still found it hard.
Thursday, February 17, 2011
I had my consultation with Dr Doezie today - the plastic surgeon on the tumor board at Mission Hospital, and the one recommended to me by Dr. Kushner. It was considerably more traumatic than I thought it would be. Now that I know more about breast implants than I ever wanted to, I am even more horrified and saddened that so many women do this to themselves voluntarily. Prior to my visit I had looked at Dr. Doezie's website, where he has posted before & after photographs of his reconstruction work. I had naively thought that reconstructed breasts would look like augmented breasts (in the dressing room at my yoga studio I've seen a lot of boob jobs in all their naked, gravity-defying glory), so I was at least able to get through the first shock of what reconstruction looks like in the privacy of my own home, with only the computer to witness my reaction. The basic shape seems to be the same in augmentation and reconstruction, I just hadn't thought about the scarring that happens during reconstruction. Of course it makes sense, incisions to remove a breast are going to be different than incisions to insert an implant. And then there's the nipple/aureola issue. After a mastectomy, you don't have them anymore. The nipple, too, can be reconstructed by a plastic surgeon, and the areola tattooed on, but I don't think I would have that done if I decide on reconstruction. For one thing, one small benefit to reconstruction is that you can give up wearing bras - and I hate wearing bras, they are uncomfortable. So I certainly wouldn't to have to wear one just to cover up a fake nipple. And if I decide to have the implants, and if I have anything tattooed on them, it would be something a lot more interesting than a fake areola.
I made it through the consult with a stiff upper lip, but after Dr. Doezie left the room and the nurse was with me, I started to break down. Then the nurse started to cry, too. I was actually quite touched by her sympathy. They didn't even have a damn box of tissues in the exam room! I guess most patients visiting plastic surgeons are happy to be there because they're changing something they want changed, so maybe there's not a lot of tears.
I got a grip on myself as best I could, then I left and sat in my car and cried. It wasn't really about the plastic surgery, it was just the proverbial straw. It was the moment that it all really hit me and I realized that this was a serious thing, and I was going to have to do some things I didn't want to do.
Friday, February 11, 2011
Today was the tumor board review. Those of us with cases being reviewed gathered in a conference room at the Women's Wellness Center at Mission Hospital, along with a volunteer who is also a breast cancer survivor, and who is there to answer questions and be a calming influence. I was encouraged to bring Pete along to this, so I did. One by one we were each called into an examining room, where we stripped down to the waist and then had 9 doctors crowd in to look at us while one or more of them did necessary poking and prodding. I was the last one in our group of 4 to be examined. After all of us had had our turn, we each went away with our respective surgeons to talk about what the board's opinions were.
This was the first time that Pete had met Dr. Kushner, and of course it was my first meeting with him since the MRI, so there was important new information to discuss. The MRI had indicated 2 other ares of concern in the right breast. If I wanted a BCT (Breast Conserving Treatment) - meaning a lumpectomy instead of mastectomy - then those areas would have to be checked using an MRI-guided biopsy. The MRI also showed that the cancer at the original biopsy site seemed to be about 1.5 cm long (about .75 inches). To do a lumpectomy, they would need to remove an additional 1 cm of clear tissue surrounding the cancer, meaning the amount of tissue being removed would be 1.5" long by about 1" wide - and that's just the original site. After explaining this, he asked me if I had any ideas about which treatment course I would want. I thought for just a moment, and said "I think mastectomy." Then Dr. Kushner said "To be honest, that's what the tumor board thinks is the best course of treatment."
The discussion then moved on to whether or not I would remove the left breast, and I asked about testing for the BRCA mutation. It turns out that this not something done automatically, or without serious consideration. I need to have an appointment with a genetic counselor before an order could be written. They found time for me to meet with her later this same day.
By the time I returned for the genetic appointment, my 5th visit to this medical building in 4 days, it had begun to feel, in a strange way, like a refuge. Outside of the people there, Pete was the only one I'd told. Outside, I was still pretending that nothing was wrong, But inside the Women's Wellness Center, they knew. They knew what needed to be done. They knew that, now, I was one of "them" - a breast cancer victim.
Thursday, February 10, 2011
Met with Dr. Kushner at Saddleback Valley Surgical Medical Group. We had an hour-long consultation, and I liked him. He reassured me that this type of cancer is very treatable, that the survival rate is almost 100% when it's caught and treated this early. He said the next step was to get an MRI, and that he would like to present me and my case at the weekly tumor board meeting, which would be happening tomorrow. His office pushed through the authorization for the MRI and arranged for a tech to stay late that day to fit me in, so I went home to try to get some work done, then came back at the end of the day for the MRI.
The MRI device was not as claustrophobic and I had feared it would be - it was shaped like a gargantuan donut, and only the body part to be scanned is inside the machine - my head and feet were sticking out. It is, however, so noisy that they gave me earplugs, and headphones over that (with my choice of music). The headphones also allowed the tech to talk to me - she gave me regular updates about how the time was proceeding. But the only way I could communicate with her was by squeezing a panic button, and she told me that the only good reason to squeeze the panic button was if I thought I was going into anaphylactic shock from the dye they inject part way through the scan. The scan was to take 32 minutes and it was ABSOLUTELY critical that I did not move ONE SINGLE MUSCLE. I had to be face down for this, but thank god they had a quite comfortable upper body cradle designed just for this purpose - not at all like the tortuous biopsy table. However, as soon as she told me to relax and just breath normally, I felt short of breath and desperately wanted to take deep lungfuls of air. But, I "passed" the test by staying still enough that they got the scan they needed.
Wednesday, February 9, 2011
My friend Stuart called this afternoon, just as I was leaving to do some errands. I spent some time complaining to him about the insurance hell I'd been through on Monday and how I didn't really think the biopsy had been necessary, and that the next time I was told I needed a biopsy I was going to just wait 6 months and do another mammogram to see if anything had changed before I rushed off and had a $4,000 procedure done for nothing. Ironic, isn't it?
As I was driving down the hill, my cell phone rang. Honestly, I never use the phone while driving, so I just made a mental note to check messages when I got to my first stop. I did my first errand, having already forgotten that I'd had a phone call. When I got back into my car, I remembered, and found a message from Dr. Breiterman, saying he had my biopsy results and would I call him back to discuss them. Right then, I knew. We do, don't we? If the news is good, they tell you so on voicemail "Hello, this is Dr. Breiterman, just wanted to let you know that I got your lab results and, as I thought, it was nothing to worry about." If the news is bad, they ask you to call them back to discuss the results.
So I called, and I became a cancer patient. He told me the next step was to probably get an MRI, and that he had already called my OB/GYN doctor with the results so their office could arrange the test for me. Needless to say, I ignored the rest of my errands and rushed home to start working on getting that appointment. My OB/GYN's office was, in fact, thoroughly useless in this matter, and after being transferred to a voicemail system to leave a woeful message I though to myself "this is not the doctor I need to be seeing next". So I called Susann, the Nurse Navigator at the Women's Wellness Center, and asked her who to call next. She referred me to the surgical group their center works with a lot - Saddleback Valley Surgical Medical Group - and I called them. I felt that as soon as I said "breast cancer" their receptionist kicked my case into High Priority - she got me an appointment with Dr. Kushner the next morning.
Tuesday, February 8, 2011
This afternoon I had a stereotactic core biopsy. When I arrived at the Women's Wellness Center at the Mission Viejo Hospital complex, a nurse was already waiting to guide me through the process. That was the first time I sensed that I had crossed a certain line - not just an impatient customer waiting for a routine mammogram, but a patient with a potentially serious illness. I spent a few minutes with Susann, who is a Nurse Navigator. Her job is "to work with you and your physician from the time of your biopsy throughout your entire treatment, including surgery, chemotherapy, radiation therapy, and beyond." When told me how the biopsy would be performed and handed me booklets about breast cancer treatment, saying "Don't read anything into this - I don't know anything you don't already know, we just give this to all biopsy patients."
Dr. Breiterman was the radiologist performing the procedure - he reviewed the films with me, and discussed the procedure and why it was being done. Only tiny specks of calcifications could be seen, and he told me he was 90% sure it was just vascular calcifications, which do happen as women age. I thought "OK, no problem".
The biopsy table is just that - a flat table with a hole in. You lie face-down, with the breast to be biopsied hanging through the hole and your head twisted to one side, flat on the table, with your opposite arm bent up under the shoulder, to sort-of tilt the biopsy breast downwards. The table is then raised, and the doctor & nurse work underneath the table. There was only mild discomfort with the biopsy procedure itself, but what was agonizing was what it did to my neck. I'm not really sure, but it seemed the procedure took about 20 minutes, and I was seriously beginning to wonder how much longer I could stand it. When it was over and I was allowed to sit up again, I literally could not move my head - my neck had completely frozen. I had to sit with an icepack on it for a while before I could make even slight movements.
The procedure done, I came home and Googled "vascular calcifications" and become more concerned about a tenuous connection between that condition and heart problems (my father died of a heart attack at 56) than I was about breast cancer.
Monday, February 7, 2011
Today was insurance hell day. I had been out of town the week before on work, and not in a position to spend a lot of time on the phone sorting out personal matters. So I hadn't had a chance to check-up on what exactly my insurance policy covered. I spent the day being ping-ponged between the Women's Wellness Center at the Mission Viejo Hospital, where the procedure would be performed, various departments at Mission Hospital, various representative of my insurance company, and assorted other radiology groups. Truly, this should be the subject of a whole other blog, and I will not dwell on it here.
But I mention insurance hell, because it was so hard to figure out what would be covered and what it would cost me ($4,000) that at one point I considered not having the biopsy done. My little breasts are packed with dense, fibrous tissue and I've had to have "special view" mammograms and an ultrasound in the past. It's true that those tests did not indicate a biopsy should be done, but with those false alarms in my past, I really thought this radiologist was being overly cautious. I was a little concerned - how can you not be? - but not much.
Thursday, January 27, 2011
I went in for my "special view" mammogram. I wasn't too concerned, having been through this process before. There was a long wait for the mammogram, then a short wait while the radiologist looked at it and decided I needed an ultrasound (still wasn't concerned, I've also been through this part before), and then a really long wait for the ultrasound. What I didn't expect was that the radiologist recommended a stereotactic core biopsy.
Monday, January 17, 2011
I went in for my annual-ish mammogram (it had been 14 or 15 months since the prior one). A few days later I got a letter saying I should go back for a "special view" mammogram.
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