One Year On
Yesterday was the one-year anniversary of my surgery, and to celebrate I gave myself the day off. Slept in, had breakfast in bed, went for a long walk with a friend, had dinner with other friends. All is well with me.
For this (probably) last post in my cancer blog, I wanted to publish some facts & figures about the mind-boggling costs involved.
Total amount billed to my insurance company: $202,223
Total amount written-off by the insurance company (this is the discount the insurance company has negotiated with the various service providers): $75,245
Our out-of-pocket expenses: $9,011
Myriad Genetics charge for BRCA test (aka "breast cancer gene" - I was told they have a patent on this, and are the only lab in the country which can do this test): $3,340
Excerpts from Mission Hospital's bill (it was $107,550, and did not include surgeon's fees or anesthesiology costs):
Central Services/Supplies (hospital booties? cranberry juice? who knows?): $45,100
Operating Room (my surgery was about 6 hours): $41,745
Room and Board (2 nights and 2 meals): $5,500
Occupational Therapy (a woman came into my room the day after surgery, and spent about 5 minutes showing me 2 simple arm exercises): $350
My treatment didn't include chemotherapy, but as you might guess, the cost of those drugs is staggering.
None of the above figures are disclosed to a patient prior to treatment. In doing my due diligence to try to find out in advance which services and health-care providers were covered by my insurance, and at what percentages, I found that I was banging my head against the proverbial brick wall (ok, really, it was the dining room table).
Can anyone imagine a situation in which you agree to pay an unknown amount for an unknown set of services, and all you know for certain is that the amount in question could bankrupt you? At the beginning of this whole process I attempted to find out what the cost of the biopsy would be. I spent an entire day on the phone, being bounced between the hospital, the breast care center, the radiology group and my insurance company. The low point was when a representative from my insurance company said he could not tell me how much they would cover, because the contracts they have with the service providers are "confidential." At which point I screamed "Do you think I won't figure it out when I get the bill? I'm the one that has to pay for it!!!!!!!!"
Onward.
Thursday, March 15, 2012
Sunday, July 10, 2011
The New Normal
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.
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.
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.
Subscribe to:
Posts (Atom)