Ignore my gray hair rant below. About an hour after I hit "post," the phone rang. I was being called for another interview at the same school, for an even better job, as the Principal's Secretary.
I was hired the next day.
Perhaps they liked the experience that my silver hair represents.
If that wasn't good enough, today I met my new plastic surgeon, Dr. CMYP. Let's just say that sometimes things happen for the best, and I'm now feeling very positive about my reconstruction.
In fact, I will no longer call him Combat Doctor's Young Partner. He deserves his own nickname, and perhaps there will come a time when I will post his real name, which I only do when they are really, really good.
For now, I will call him Dr. Hoperestoration.
Unlike my previous plastic surgeon, he believes he can give me an acceptable result. He can loosen the pulling scar tissue running from my armpit to my mastectomy scar (which makes it really hard to shave my pit, by the way, it's not a nice round area anymore). I was told that could not be done. He says he can give me a symmetrical result in clothes, and I would even be able to wear a scoop neck top and nobody would know the difference. (Except, of course, you blog readers.)
My old plastic surgeon told me I'd probably always need a prosthesis of some sort. Dr. Hoperestoration looked at me funny when I asked if I'd need one, and he said definitely not. My old plastic surgeon told me I "might" get up to an A cup, and this doctor asked what size bra I wore and didn't blink when I said I wanted to stay my previous size, a C. No problem.
In fact, he said that if we started all over again - if he removed the expander and put a new one in the correct place, he could get me my inframammory fold back - a feat that I thought impossible. But, at this point, with a new job and having come this far in my recovery, I don't want to start all over. If I can look good in clothes, get dressed without problems, shop and buy stuff I like without worrying about whether the item masks a defect, and sleep on my stomach, I'll be happy.
He thinks that's all likely.
Life is all chocolate and diamonds right now.
The only negative is that because I have a new job, I can't schedule my reconstruction until I get a school break. If I was at my old job, which I know well, I could schedule it for September, which, after the rush of getting the new year started, tends to be kind of quiet. Knowing the job well, after my recovery, I could catch up quickly.
With a new job, I won't know when the quiet times are, and won't know the rhythm of the school, and have too much to learn to take a week off.
Plus, it would be bait and switch for me to have interviewed, talked myself up, been hired and then say, "Oh, by the way, I had cancer and need time off for this first in a series of surgeries."
I won't do that, it's not fair.
Fortunately, I work in a school, and we do get a lot of time off. So, the expander stays in until November. I'll give up Thanksgiving for recovery. Which is exactly what I did last year too. Stepdaughter, you are welcome to cook again. :) Son's girlfriend, you are too.
Son?
Okay, I know better.
Four extra months seems like a long time to keep this miserable expander in, but it's a small price to pay for a good job and a good doctor.
Can you smell the roses? I can.
.
Friday, July 30, 2010
Tuesday, July 27, 2010
This whole Gray Hair thing
Like you all do, I look online for validation of my personal choices. So, after my hair grew in gray, and when I decided not to dye it back immediately, I turned to the web to be sure that I'm still stylish and the fashionista I always used to be.
I found lots of approval. Apparently, gray hair is totally in and the new trend among the hipster set. (And, by hipster, I don't mean anybody who has broken theirs.) Gray is walking the runways and socialites such as Pixie Geldof are embracing the color. Why, even Kelly Osbourne has gray hair now!
And they have to pay! I get mine for free!
There is quite the gray movement going on, including on a fantastic website called Going Gray, Looking Great, with stories of women who have actually chosen to let their natural hair color grow out, which they call transitioning.
They didn't do it the easy way, like I did.
Looking at pictures like these, I am assured that I am right in trend:
There are beautiful names for our hair. We are silver, or icicle gray, or snowey-tipped, or sparkling pewter. Lovely sounds, all.
And yet, each time I am walking down the street or in a mall and catch a glimpse of myself in a reflection, I don't recognize myself. "Who is that old lady?" And when I look around the streets to see other women with my hair color, I am not seeing the Kelly Osbournes out there.
I mostly see this:
Needless to say, I am conflicted.
It all came to a head (har har) the other day, when I had a job interview. Now, I like my job as a middle school secretary, but I drive two cities away to get there. Because school starts so early, I have to get up at 5:00 a.m. With my tamoxifen pain and inability to sleep properly, I am thinking I'm going to struggle with that - a lot.
So, I was extremely excited to discover that a job was opening up that I am eminently qualified for, and which is a five minute drive from me. Not only is it close to my house, but it is also the high school my son will attend next year. It would be a dream come true to work there. The drive would be gone, the worry about being so far from my son would be gone.
Plus, nobody there knows I had cancer. I would be free to start fresh.
It was time for me to get a break. It's been a tough year, with cancer, two pets dying, our car stolen, the expensive medical-related expenses cancer brings, and all the associated problems that life enjoys throwing at you all at once.
Seeing the job posted at my son's future school - well, it was a sign. Things are about to get easier on me.
So, I applied. And, unsurprisingly, I got an interview.
I was confident. I was prepared. I am perfect for the job. I knew what they were going to ask because I have typed those questions for my boss before. I felt sure I would be a top candidate.
I even treated myself to new clothes. I bought a pink and gray blouse (I know, but I don't always hate pink) and a grey skirt which I felt that would match my silver hair.
I walked confidently into the interview room, and was startled to see on the panel somebody I'd worked with two years ago. She looked shocked at my appearance and commented on my hair, which immediately flustered me. "Does she know I had cancer, does she know why it looks so different?"
I sat down to the interview, suddenly plunged into cancer mode, on the defensive, wondering what they knew, would they hire me anyway?
Instead of my new mantra, "I've been through cancer, this is nothing." Or, "Hell, if Carly Fiorina can run for Senate after her treatment, than I can certainly handle a job interview" I was in scramble mode, inarticulate. I was the actress who not only went out on stage and forgot her lines, but also forgot her costume. I stood there naked, not knowing what to say, the audience feeling sorry for me.
And, it was one of those situations where instead of recovering my composure after taking a couple of deep breaths, I got worse and worse and blew it so bad that I knew before I'd walked out that I hadn't gotten the job. The only way I could have won that position was if all the other candidates look like that lady with the pipe above.
Even then, it wouldn't be assured.
Cancer has taken a breast, eighteen months of my time, my energy and strength. And, the other day, it took my confidence and thus, a job I really wanted.
I actually like my icicle/snow/pewter hair. But, if it is going to become emblematic of my cancer experience and shake my confidence when people notice it - and it's only natural that they will - then it's going to have to go.
I'm still not "cancer girl" and never hope to be. But, I'm not the old me either, and now I know I never will be again. For now, acceptance of the changes cancer brought is something I realize I'm going to have to work on.
.
I found lots of approval. Apparently, gray hair is totally in and the new trend among the hipster set. (And, by hipster, I don't mean anybody who has broken theirs.) Gray is walking the runways and socialites such as Pixie Geldof are embracing the color. Why, even Kelly Osbourne has gray hair now!
And they have to pay! I get mine for free!
There is quite the gray movement going on, including on a fantastic website called Going Gray, Looking Great, with stories of women who have actually chosen to let their natural hair color grow out, which they call transitioning.
They didn't do it the easy way, like I did.
Looking at pictures like these, I am assured that I am right in trend:
There are beautiful names for our hair. We are silver, or icicle gray, or snowey-tipped, or sparkling pewter. Lovely sounds, all.
And yet, each time I am walking down the street or in a mall and catch a glimpse of myself in a reflection, I don't recognize myself. "Who is that old lady?" And when I look around the streets to see other women with my hair color, I am not seeing the Kelly Osbournes out there.
I mostly see this:
Needless to say, I am conflicted.
It all came to a head (har har) the other day, when I had a job interview. Now, I like my job as a middle school secretary, but I drive two cities away to get there. Because school starts so early, I have to get up at 5:00 a.m. With my tamoxifen pain and inability to sleep properly, I am thinking I'm going to struggle with that - a lot.
So, I was extremely excited to discover that a job was opening up that I am eminently qualified for, and which is a five minute drive from me. Not only is it close to my house, but it is also the high school my son will attend next year. It would be a dream come true to work there. The drive would be gone, the worry about being so far from my son would be gone.
Plus, nobody there knows I had cancer. I would be free to start fresh.
It was time for me to get a break. It's been a tough year, with cancer, two pets dying, our car stolen, the expensive medical-related expenses cancer brings, and all the associated problems that life enjoys throwing at you all at once.
Seeing the job posted at my son's future school - well, it was a sign. Things are about to get easier on me.
So, I applied. And, unsurprisingly, I got an interview.
I was confident. I was prepared. I am perfect for the job. I knew what they were going to ask because I have typed those questions for my boss before. I felt sure I would be a top candidate.
I even treated myself to new clothes. I bought a pink and gray blouse (I know, but I don't always hate pink) and a grey skirt which I felt that would match my silver hair.
I walked confidently into the interview room, and was startled to see on the panel somebody I'd worked with two years ago. She looked shocked at my appearance and commented on my hair, which immediately flustered me. "Does she know I had cancer, does she know why it looks so different?"
I sat down to the interview, suddenly plunged into cancer mode, on the defensive, wondering what they knew, would they hire me anyway?
Instead of my new mantra, "I've been through cancer, this is nothing." Or, "Hell, if Carly Fiorina can run for Senate after her treatment, than I can certainly handle a job interview" I was in scramble mode, inarticulate. I was the actress who not only went out on stage and forgot her lines, but also forgot her costume. I stood there naked, not knowing what to say, the audience feeling sorry for me.
And, it was one of those situations where instead of recovering my composure after taking a couple of deep breaths, I got worse and worse and blew it so bad that I knew before I'd walked out that I hadn't gotten the job. The only way I could have won that position was if all the other candidates look like that lady with the pipe above.
Even then, it wouldn't be assured.
 |
| This is what I looked like when the interviewer knew me |
 |
| Me now |
Cancer has taken a breast, eighteen months of my time, my energy and strength. And, the other day, it took my confidence and thus, a job I really wanted.
I actually like my icicle/snow/pewter hair. But, if it is going to become emblematic of my cancer experience and shake my confidence when people notice it - and it's only natural that they will - then it's going to have to go.
I'm still not "cancer girl" and never hope to be. But, I'm not the old me either, and now I know I never will be again. For now, acceptance of the changes cancer brought is something I realize I'm going to have to work on.
.
Saturday, July 24, 2010
Insurance Units
In the mail today, I received a letter stating that my insurance company has, a mere 46 days after being abandoned by my old plastic surgeon, approved a referral to what I hope is my new plastic surgeon, Combat Doctor's Young Partner, now known as Dr. CDYP. (Whose name you wouldn't believe even if I told you.)
The letter states that I am allowed one "Treatment/Unit" and this expires October 7.
A treatment unit?
What the heck is a treatment unit?
Reading further, I see that I am allowed this: Office/Outpatient Visit, New.
I already have an appointment for July 30th. This Office/Outpatient Visit will be considered my 1 Treatment/Unit.
In a strange coincidence, there was a TV show I liked very much called The Unit. It starred the dreamy Dennis Haysbert, who played a special forces leader who often saved people in peril from evil governments. He also showed up on some of my cancer meds packaging materials.
Is this some sort of sign?
During this upcoming treatment/unit, can Dr. CMYP do some actual treating? Because, I'm thinking about having him remove some of the saline in my expander and relieving the pressure. I've been having some pretty extreme, stabbing pains in that area, especially if I move my arm, likely due to sleeping on it. It feels like it's moved out of place too, so I want him to check that. Would that be one treatment unit, or two?
What about surgery? Taking out the expander and putting in an implant is how many treatment units?
Who requests these units from my insurance company? Oh, the letter says it, sorta. "When applicable, authorization for additional care or visits may be requested by the specialist or provider above."
Do you know how many doctors' names are "above?" Four, including the doctor who broke up with me. Which one requests these additional treatment units? I hope Dr. CDYP.
The fact that my treatment unit expires is alarming. I have had the damn expander in this long, I decided that I would schedule surgery during a school vacation so as not to impact my job. That means it would have to stay in until Thanksgiving time, or even Christmas. I could, I suppose, surround labor day with surgery and just take two days off - I really would like this thing out of me, especially now that it feels like I'm being stabbed from the inside - but I doubt that things happen that quickly anymore.
But, if these treatment units are going to expire, I may not get a choice.
I wonder if this is some sort of communist plot to ration healthcare. Instead of procedures, surgeries, hospitalizations and visits, we will be getting treatment/units. Breast cancer? That is 5,000 treatment units. Use those up, and you are done.
Where's Dennis Haysbert when you need him?
.
The letter states that I am allowed one "Treatment/Unit" and this expires October 7.
A treatment unit?
What the heck is a treatment unit?
Reading further, I see that I am allowed this: Office/Outpatient Visit, New.
I already have an appointment for July 30th. This Office/Outpatient Visit will be considered my 1 Treatment/Unit.
In a strange coincidence, there was a TV show I liked very much called The Unit. It starred the dreamy Dennis Haysbert, who played a special forces leader who often saved people in peril from evil governments. He also showed up on some of my cancer meds packaging materials.
Is this some sort of sign?
During this upcoming treatment/unit, can Dr. CMYP do some actual treating? Because, I'm thinking about having him remove some of the saline in my expander and relieving the pressure. I've been having some pretty extreme, stabbing pains in that area, especially if I move my arm, likely due to sleeping on it. It feels like it's moved out of place too, so I want him to check that. Would that be one treatment unit, or two?
What about surgery? Taking out the expander and putting in an implant is how many treatment units?
Who requests these units from my insurance company? Oh, the letter says it, sorta. "When applicable, authorization for additional care or visits may be requested by the specialist or provider above."
Do you know how many doctors' names are "above?" Four, including the doctor who broke up with me. Which one requests these additional treatment units? I hope Dr. CDYP.
The fact that my treatment unit expires is alarming. I have had the damn expander in this long, I decided that I would schedule surgery during a school vacation so as not to impact my job. That means it would have to stay in until Thanksgiving time, or even Christmas. I could, I suppose, surround labor day with surgery and just take two days off - I really would like this thing out of me, especially now that it feels like I'm being stabbed from the inside - but I doubt that things happen that quickly anymore.
But, if these treatment units are going to expire, I may not get a choice.
I wonder if this is some sort of communist plot to ration healthcare. Instead of procedures, surgeries, hospitalizations and visits, we will be getting treatment/units. Breast cancer? That is 5,000 treatment units. Use those up, and you are done.
Where's Dennis Haysbert when you need him?
 |
| On my letter |
.
Thursday, July 22, 2010
Online Cancer Rally
I received the following and had planned to embed the media for you to see tomorrow, but as it turns out, I will not be in front of my computer tomorrow.
So, I will share the information with you now, and tomorrow you can click the link to find it:
.
So, I will share the information with you now, and tomorrow you can click the link to find it:
Cancer Treatment Centers of America will be hosting an online Empowerment Rally featuring a diverse group of five cancer survivors/advocates participating in a roundtable discussion on patient empowerment. The Rally is a platform for the voice of these five survivors to discuss what mattered most in their cancer care, choosing the best treatment facility, and sources of empowerment during their cancer journey. One participant is a Hodgkin’s lymphoma survivor, three participants are breast cancer survivors, and the final participant is a brain cancer survivor. All participants received treatment at different cancer centers across the United States, bringing unique cancer care perspectives and experiences to the table.
We hope you can view our live stream of the event (and/or participate by posting questions for our moderator) by visiting www.livestream.com/cancercenter. I’ve listed key details below including date, time, RSVP information, participant social networking information, and more information about the new CTCA Patient Empowered Care model.
When:
Friday, July 23, 2010
3:30-4:30 p.m. (Eastern Time) / 2:30-3:30 p.m. (Central Time)
Tune in to a live stream of event:
The Rally will be streamed live online at
www.livestream.com/cancercenter
Mark it on your calendar, share it with your friends and family, and log-on to participate!
.
Hot Flash Machine
I love the state fair for many reasons, not the least of which is the items for sale. I buy 1200 thread count Egyptian Cotton California King sheets there every year, for $25.00.
Try to find that price at Macys.
This year, I also discovered this delightful toy, and at a price of only $12,00, it will give me hours of sweet relief.
What is it, you ask? It's an industrial sized pump mister, perfect for hot flashes. You pump the top ten times, and then each time you squeeze the handle you get a light mist of cooling water, good for a days worth of chronic hot flashes.
Do you see that it even came with a strap? You know how those flashy rappers wear hubcaps around their necks? Well, this is bling for the tamoxifen set.
You might ask, do I really walk around all day with a pump mister hanging around my neck? And, the answer is yes.
Yes, I do.
Try to find that price at Macys.
This year, I also discovered this delightful toy, and at a price of only $12,00, it will give me hours of sweet relief.
What is it, you ask? It's an industrial sized pump mister, perfect for hot flashes. You pump the top ten times, and then each time you squeeze the handle you get a light mist of cooling water, good for a days worth of chronic hot flashes.
Do you see that it even came with a strap? You know how those flashy rappers wear hubcaps around their necks? Well, this is bling for the tamoxifen set.
You might ask, do I really walk around all day with a pump mister hanging around my neck? And, the answer is yes.
Yes, I do.
Wednesday, July 21, 2010
Latisse and Breast Cancer
Brooke Shields and I could be identical twins, except for the unfortunate fact that she has one more breast than I do.
I didn't mean to make her jealous.
For a while there, her eyelashes were longer than mine too, in that she had some and I didn't. But, those days are over. I now have the same luxurious, fluttery lashes that Brookie does. (Only her closest friends are allowed to call her Brookie.)
Since Brookie has already shared our secret, I suppose that it's okay for me to discuss it. The product we use to get these gorgeous lashes is called Latisse.
Now, here's a secret: before I got cancer, I was rather vain. Hmmmm..... vain isn't the right word, because I never thought I was pretty. I think a better phrase for what I felt was, "fear of aging." I didn't feel old, why should I look it?
I got started on botox because it helps migraines. I kept up with botox because I liked the smooth results. After that, it was easy to graduate to restaylane to fill in some lines, and I also used the forerunner to Latisse, called Revitalash, to lengthen my lashes.
Did you know that Latisse was originally made to help breast cancer patients?
The old formulation of Revitalash contained bimataprost, the same thing that is in Latisse. Bimataprost is prescribed for people with glaucoma. The fable begins with an eye doctor who noticed that his patients who used the glaucoma drug also had very long eyelashes. When his wife was diagnosed with breast cancer and her eyelashes fell out, he came up with this brush-on formulation to help her grow them back. Revitalash was born.
Unfortunately for him, Allergan owns the bimataprost molecule so a patent fight ensued. Allergan won, created Latisse, and last I checked Revitalash is just a very expensive conditioning product.
I knew Latisse would work, and so I asked for a prescription. But, I didn't start it until after chemotherapy was over. While it's highly unlikely there would be any interaction with my chemo drugs, I checked, and nobody knew for sure. Latisse is supposed to grow cells and I was trying to kill cells, so I figured I'd just wait.
My last chemo was March 31st. April 5th, I applied my first dose of Latisse in the empty spaces where my lashes should have been. Today, July 21st, not only are all my lashes grown in, but many of them are longer than they ever have been. They are not all evenly lush yet - I have a few in the middle that are approaching 3/4 of an inch long, while at the corners they are normal lashes - but they'll get there.
Here is why women with breast cancer like Latisse: many women who had chemo are distressed to discover that their lashes grow in and then fall out again at the same time. This happens because your lashes are on the same growth cycle, not a staggered one like before. It can take up to a year for their old cycles to restart. Latisse will help you keep you lashes in.
There are some tips for using the product that I have gained from when it was Revitalash. Since I know many women who have finished chemo are interested in this product, I will share them with you. However, you need to take your own advice, not mine. One tip I am going to share contradicts what is on the packaging materials, so you are on your own there.
Latisse comes with individual sterile brushes. They are thick, clumsy, and use a lot of the product. Some people have reported side effects with Latisse, such as redness and soreness. I think - and this is purely my opinion - that the brush is way too thick, and you get too much product on it and that may cause some of the symptoms.
Instead, I have my own brush, a very thin eyeliner brush. I put one drop of Latisse in the cap, and dip the brush in the cap and precisely line my eyes that way. Then I clean the brush. Also, because you are using less of the product, your Latisse will last longer. Latisse costs $120.00 for a month's supply - if you use their brushes. Mine lasted almost three months before I needed to refill it. (Photos of the two brushes are below)
A cynical person might think they included those large brushes so you would use the product up faster and spend more money. Of course, I'm not cynical, and I know they did it for your health and you should totally use their brushes and not your own.
There have been stories of Latisse turning light colored eyes to brown. That is true - but only when used as a glaucoma drug and used as eye-drops. In all the studies done on this medication as an eyelash enhancer, there hasn't been one case of eyes turning color.
Now, it can darken your lash line. It hasn't done that to me, and I'm not sure it'd be a bad thing anyway. What darkened my lash line, and in fact, my entire eye area, was chemo. I have dark circles now that I never had before.
Another thing you need to know, is that Latisse is not fast-acting. And, you also have to be faithful with it. It can take two months to see growth, and that is for women who started with normal lashes. You have to use it every night. If you stop using it, it stops working. But, if you are faithful, you will see results.
Now that I have been through the dangers of cancer, you might be saying, "Surely she doesn't care if she looks old any more?" And, the fact is, I have come to accept it a bit more. Obviously, the point of all I've been through the past year was so I could get old. So, no, I don't have any fear of aging any longer. There is a big demarcation in my life, cut right in half by cancer. I accept my gray hair, and I'm trying to accept what tamoxifen has done to my skin. (I'm looking a bit like an snakeskin purse these days.)
Instead of thinking in terms of looking young, I now think in terms of looking healthy.
But you know what? I still don't like that line between my eyes on my forehead. People think I'm angry when I'm not.
So, as Brookie might say, I'll probably still do a little freshening up.
The one on the left is the brush that comes with Latisse. The one on the right is my own brush.
I didn't mean to make her jealous.
For a while there, her eyelashes were longer than mine too, in that she had some and I didn't. But, those days are over. I now have the same luxurious, fluttery lashes that Brookie does. (Only her closest friends are allowed to call her Brookie.)
Since Brookie has already shared our secret, I suppose that it's okay for me to discuss it. The product we use to get these gorgeous lashes is called Latisse.
Now, here's a secret: before I got cancer, I was rather vain. Hmmmm..... vain isn't the right word, because I never thought I was pretty. I think a better phrase for what I felt was, "fear of aging." I didn't feel old, why should I look it?
I got started on botox because it helps migraines. I kept up with botox because I liked the smooth results. After that, it was easy to graduate to restaylane to fill in some lines, and I also used the forerunner to Latisse, called Revitalash, to lengthen my lashes.
Did you know that Latisse was originally made to help breast cancer patients?
The old formulation of Revitalash contained bimataprost, the same thing that is in Latisse. Bimataprost is prescribed for people with glaucoma. The fable begins with an eye doctor who noticed that his patients who used the glaucoma drug also had very long eyelashes. When his wife was diagnosed with breast cancer and her eyelashes fell out, he came up with this brush-on formulation to help her grow them back. Revitalash was born.
Unfortunately for him, Allergan owns the bimataprost molecule so a patent fight ensued. Allergan won, created Latisse, and last I checked Revitalash is just a very expensive conditioning product.
I knew Latisse would work, and so I asked for a prescription. But, I didn't start it until after chemotherapy was over. While it's highly unlikely there would be any interaction with my chemo drugs, I checked, and nobody knew for sure. Latisse is supposed to grow cells and I was trying to kill cells, so I figured I'd just wait.
My last chemo was March 31st. April 5th, I applied my first dose of Latisse in the empty spaces where my lashes should have been. Today, July 21st, not only are all my lashes grown in, but many of them are longer than they ever have been. They are not all evenly lush yet - I have a few in the middle that are approaching 3/4 of an inch long, while at the corners they are normal lashes - but they'll get there.
Here is why women with breast cancer like Latisse: many women who had chemo are distressed to discover that their lashes grow in and then fall out again at the same time. This happens because your lashes are on the same growth cycle, not a staggered one like before. It can take up to a year for their old cycles to restart. Latisse will help you keep you lashes in.
There are some tips for using the product that I have gained from when it was Revitalash. Since I know many women who have finished chemo are interested in this product, I will share them with you. However, you need to take your own advice, not mine. One tip I am going to share contradicts what is on the packaging materials, so you are on your own there.
Latisse comes with individual sterile brushes. They are thick, clumsy, and use a lot of the product. Some people have reported side effects with Latisse, such as redness and soreness. I think - and this is purely my opinion - that the brush is way too thick, and you get too much product on it and that may cause some of the symptoms.
Instead, I have my own brush, a very thin eyeliner brush. I put one drop of Latisse in the cap, and dip the brush in the cap and precisely line my eyes that way. Then I clean the brush. Also, because you are using less of the product, your Latisse will last longer. Latisse costs $120.00 for a month's supply - if you use their brushes. Mine lasted almost three months before I needed to refill it. (Photos of the two brushes are below)
A cynical person might think they included those large brushes so you would use the product up faster and spend more money. Of course, I'm not cynical, and I know they did it for your health and you should totally use their brushes and not your own.
There have been stories of Latisse turning light colored eyes to brown. That is true - but only when used as a glaucoma drug and used as eye-drops. In all the studies done on this medication as an eyelash enhancer, there hasn't been one case of eyes turning color.
Now, it can darken your lash line. It hasn't done that to me, and I'm not sure it'd be a bad thing anyway. What darkened my lash line, and in fact, my entire eye area, was chemo. I have dark circles now that I never had before.
Another thing you need to know, is that Latisse is not fast-acting. And, you also have to be faithful with it. It can take two months to see growth, and that is for women who started with normal lashes. You have to use it every night. If you stop using it, it stops working. But, if you are faithful, you will see results.
Now that I have been through the dangers of cancer, you might be saying, "Surely she doesn't care if she looks old any more?" And, the fact is, I have come to accept it a bit more. Obviously, the point of all I've been through the past year was so I could get old. So, no, I don't have any fear of aging any longer. There is a big demarcation in my life, cut right in half by cancer. I accept my gray hair, and I'm trying to accept what tamoxifen has done to my skin. (I'm looking a bit like an snakeskin purse these days.)
Instead of thinking in terms of looking young, I now think in terms of looking healthy.
But you know what? I still don't like that line between my eyes on my forehead. People think I'm angry when I'm not.
So, as Brookie might say, I'll probably still do a little freshening up.
The one on the left is the brush that comes with Latisse. The one on the right is my own brush.
Tuesday, July 20, 2010
Don't tell a breast cancer patient they are lucky
So far in the course of my cancer treatment, I haven't been the recipient of any ignorant remarks.
I hear this is rare.
When it came to my physical appearance, strangers either didn't notice my lack of hair, pretended not to notice, or complimented me on my scarves. Nary a rude word.
This is more amazing when you note that I work in a middle school and worked during chemo. Not one kid said a word to me. You might think that's because I'm an authority figure at the school, and so I laugh at your ignorance; you clearly haven't been on a school campus lately if you think that would stop a kid from making a rude comment. In fact, I had one boy actually make fun of my wide-legged pants, asking me if I thought I was still in the 70s. (They are, by the way, very fashionable - check InStyle this month if you don't think so.)
I was actually delighted that this boy showed an interest in fashion, and told him so.
The fact that I heard no rude comments tells me that most kids and adults are very compassionate.
I heard from one acquaintance though, a very pretty, feminine woman who formerly had long blonde hair, that during her process of regrowth somebody called her a "dyke." I cannot imagine the thought process of anyone who could say such a thing. (Cancer or no). I imagine it's quite simple - they don't think at all.
It's a good thing I had not experienced a comment like that, because as those who know me will attest, I am not the kind to suffer in silence.
In fact, I suffer quite loudly. Somebody would have been embarrassed, but it would not have been me.
Now, people have said things that made me a bit uncomfortable. I have been told how courageous I am, for example. I don't understand a comment like that - I was drafted into this pink war, I didn't volunteer. There is a huge difference between being courageous and having no choice but to put one foot in front of the other. But it wasn't a rude comment, it was complimentary, and so you just say thank you.
The closest anybody got to being rude was dissing my insurance choice, when by then, I couldn't do anything about, had I even wanted to. But, that comment came from worry that things weren't happening fast enough so even then, there was kindness behind the remark.
I generally cut people slack in this arena. Most people don't know what to say when they discover you have a scary disease like cancer. So, had somebody said something unintentionally rude, I would pay more attention to the meaning behind the words than the actual words.
Before I had cancer, I wouldn't have known the perfect thing to say either.
I just got a text from a friend, who also has breast cancer and who had a bilateral mastectomy. She is also in the process of reconstruction, and has tissue expanders in place. She has to have them for a year, due to her need for radiation.
Before I go on, let me tell you that TE's are no picnic. They don't feel like breasts; they are hard as a rock. If you hug me, you will feel like you are hugging somebody who smuggled a boulder in her bra. Your skin is stretched over them and often bruised, and because you have no breast tissue left they can rub on ribs and against the inside of your skin. They have valves that can poke into thin skin and cause pain. Sleeping is difficult because they are so hard, getting dressed is difficult because they aren't in the right places. They are generally an uncomfortable pain in the chest.
So, on this hot day, my friend texted me said that somebody had plaintively said she was, "so lucky she didn't have to wear a bra."
Wow, that is lucky! Maybe she should run out and play the lottery!
As much slack as I cut people, I can't see this comment as anything but insensitive. I'm sure my friend would rather wear a bra every day and night for the rest of her life rather than have had Stage III breast cancer, had her breasts amputated, and have expanders inside her for a year.
I am looking for the kindness behind that remark, and am not finding much there.
I'm all about looking for the positives in any situation you can. But, not having to wear a bra because you had cancer and now have tissue expanders isn't lucky.
Even if it is hot outside.
.
I hear this is rare.
When it came to my physical appearance, strangers either didn't notice my lack of hair, pretended not to notice, or complimented me on my scarves. Nary a rude word.
This is more amazing when you note that I work in a middle school and worked during chemo. Not one kid said a word to me. You might think that's because I'm an authority figure at the school, and so I laugh at your ignorance; you clearly haven't been on a school campus lately if you think that would stop a kid from making a rude comment. In fact, I had one boy actually make fun of my wide-legged pants, asking me if I thought I was still in the 70s. (They are, by the way, very fashionable - check InStyle this month if you don't think so.)
I was actually delighted that this boy showed an interest in fashion, and told him so.
The fact that I heard no rude comments tells me that most kids and adults are very compassionate.
I heard from one acquaintance though, a very pretty, feminine woman who formerly had long blonde hair, that during her process of regrowth somebody called her a "dyke." I cannot imagine the thought process of anyone who could say such a thing. (Cancer or no). I imagine it's quite simple - they don't think at all.
It's a good thing I had not experienced a comment like that, because as those who know me will attest, I am not the kind to suffer in silence.
In fact, I suffer quite loudly. Somebody would have been embarrassed, but it would not have been me.
Now, people have said things that made me a bit uncomfortable. I have been told how courageous I am, for example. I don't understand a comment like that - I was drafted into this pink war, I didn't volunteer. There is a huge difference between being courageous and having no choice but to put one foot in front of the other. But it wasn't a rude comment, it was complimentary, and so you just say thank you.
The closest anybody got to being rude was dissing my insurance choice, when by then, I couldn't do anything about, had I even wanted to. But, that comment came from worry that things weren't happening fast enough so even then, there was kindness behind the remark.
I generally cut people slack in this arena. Most people don't know what to say when they discover you have a scary disease like cancer. So, had somebody said something unintentionally rude, I would pay more attention to the meaning behind the words than the actual words.
Before I had cancer, I wouldn't have known the perfect thing to say either.
I just got a text from a friend, who also has breast cancer and who had a bilateral mastectomy. She is also in the process of reconstruction, and has tissue expanders in place. She has to have them for a year, due to her need for radiation.
Before I go on, let me tell you that TE's are no picnic. They don't feel like breasts; they are hard as a rock. If you hug me, you will feel like you are hugging somebody who smuggled a boulder in her bra. Your skin is stretched over them and often bruised, and because you have no breast tissue left they can rub on ribs and against the inside of your skin. They have valves that can poke into thin skin and cause pain. Sleeping is difficult because they are so hard, getting dressed is difficult because they aren't in the right places. They are generally an uncomfortable pain in the chest.
So, on this hot day, my friend texted me said that somebody had plaintively said she was, "so lucky she didn't have to wear a bra."
Wow, that is lucky! Maybe she should run out and play the lottery!
As much slack as I cut people, I can't see this comment as anything but insensitive. I'm sure my friend would rather wear a bra every day and night for the rest of her life rather than have had Stage III breast cancer, had her breasts amputated, and have expanders inside her for a year.
I am looking for the kindness behind that remark, and am not finding much there.
I'm all about looking for the positives in any situation you can. But, not having to wear a bra because you had cancer and now have tissue expanders isn't lucky.
Even if it is hot outside.
.
Monday, July 19, 2010
Your turn to write
Would those of you who like my blog pretty please do me a favor and review my blog for Kindle on Amazon? Click on the link and it will take you right there.
I'd especially appreciate it from all sixteen of you Kindle subscribers, who can actually see what it looks like on the device. Believe it or not, I think of you often - you who actually pay for my words. Not that I don't love you freeloaders too, (and really, shouldn't you who get this as a freebie feel a bit obligated to do me a favor?)
But, you kindle readers - I'm thrilled that you pay for something that is accessible at no cost. I'm just very pleased with you all. If you were puppies I would pat you on the head and give you lots and lots of treats. Just for you, I try to do a minimum of three blog posts a week, so you get what you are paying for. I also try to keep the videos to a minimum since I know you can't see them.
As an FYI: I don't set the prices for kindle, Amazon does that. I wouldn't charge if it was up to me (since I hate money and all), but I have no say. I get something like 20% of the dollar they charge. Although, I won't deny that $3.20 per month does come in handy.
Why am I asking you readers to review it? I was told recently that the more reviews, the higher up on the blog list it will go, and the more people will find it who need it.
I started this little blog to update friends and family with my disease and treatment, but as I approach an astonishing 80,000 page views, I think I should admit the focus has changed. (I don't have that many friends.) I blush to hear people say that I might be helping others through their own cancer experience, which is more than I ever conceived possible.
I do see that people find it and read it from start to finish. I know when I was first diagnosed, I did the exact same thing. Unfortunately, the first breast cancer blog I found ended in the woman's death, so I think having a nice positive one where your heroine lives a long life, cleaning up dog poop and working an average job, driving her son to school, and watching her hair grow back is more hopeful for the newly diagnosed, don't you think?
So, review me, bump me up, star me, and let people find me.
Thank you!
I'd especially appreciate it from all sixteen of you Kindle subscribers, who can actually see what it looks like on the device. Believe it or not, I think of you often - you who actually pay for my words. Not that I don't love you freeloaders too, (and really, shouldn't you who get this as a freebie feel a bit obligated to do me a favor?)
But, you kindle readers - I'm thrilled that you pay for something that is accessible at no cost. I'm just very pleased with you all. If you were puppies I would pat you on the head and give you lots and lots of treats. Just for you, I try to do a minimum of three blog posts a week, so you get what you are paying for. I also try to keep the videos to a minimum since I know you can't see them.
As an FYI: I don't set the prices for kindle, Amazon does that. I wouldn't charge if it was up to me (since I hate money and all), but I have no say. I get something like 20% of the dollar they charge. Although, I won't deny that $3.20 per month does come in handy.
Why am I asking you readers to review it? I was told recently that the more reviews, the higher up on the blog list it will go, and the more people will find it who need it.
I started this little blog to update friends and family with my disease and treatment, but as I approach an astonishing 80,000 page views, I think I should admit the focus has changed. (I don't have that many friends.) I blush to hear people say that I might be helping others through their own cancer experience, which is more than I ever conceived possible.
I do see that people find it and read it from start to finish. I know when I was first diagnosed, I did the exact same thing. Unfortunately, the first breast cancer blog I found ended in the woman's death, so I think having a nice positive one where your heroine lives a long life, cleaning up dog poop and working an average job, driving her son to school, and watching her hair grow back is more hopeful for the newly diagnosed, don't you think?
So, review me, bump me up, star me, and let people find me.
Thank you!
Sunday, July 18, 2010
Chemo @ Home?
I just read about a new breakthrough in cancer treatment being pioneered in Canada: Chemotherapy at home.
A nurse shows up at your door, starts your IV, monitors you in your home. You are surrounded by loving pets and have access to bathroom necessities.
It sounds wonderful, doesn't it?
I began fantasizing about how that would go down in my house.
~~
It's the day before chemo, and I start nagging my family. "Pick up your stuff! Clean the counters! Don't you know the nurse is coming over tomorrow?" No matter how sick and tired I feel, a stranger is coming over, and I can't have them see this mess. I get my my aching, exhausted bones up, inspect the kitchen, wax the hardwood floor, clean the leather couch, and wash my blankets. All the detritus that collected in the house since the last chemo visit three weeks ago; the stuff that comes from living with all males - school books, papers, socks, sweaters, balls, shoes - all that has to be picked up and put away.
I'd better schedule my treatment on Mondays, so I have the weekend to clean.
Of course, I'll have to hit the store. The nurse will want something to drink and it would be rude of me to allow her to sit for hours without offering her an iced tea or a soda. What kind of soda will she like? Should I get sugar-free, just in case? Should I have a variety? And, what if it's a long chemo session - sometimes they take 6 or 7 hours. I'll have to have food too, the poor thing has to eat.
I'd better make a shopping list. I wonder what kind of sandwiches she likes? I make a pretty good chicken salad. I can make fruit salad too, everybody likes that. Or, perhaps a quiche would be better, and salad to go with it.
What if I get a male nurse? Will he eat quiche? I've heard real men don't eat quiche, but then again, these are male nurses, they've already broken one mold. Should I get some salami or something though? I guess I better get a variety, just in case.
I'll shop and clean on Saturday, and Sunday I'll cook.
The nurse might get bored, sitting there with only one patient. It's my house so no daytime TV allowed. The View is banned in my home. But, since I'm going to the store, I will pick up some magazines, so she'll have something to do. What if it's a dude? Maybe he'll like Wired. I should get some Suduku too, most people seem to enjoy that puzzle.
I ask my husband to sweep the front porch and get rid of the spider webs.
It's Monday and time for the nurse to arrive. Having your dogs around you during chemo is lovely. Unless, you happen to have a 125 pound boisterous Labrador Retriever who absolutely LOVES everybody he meets and greets everybody the same way. First, with the traditional crotch sniffing, then with the friendly tail whip, and finally the big smile/drool on pants. My sedate greyhound would look up from his bed, wag his tail, fart, and then take a nap.
The smell of greyhound gas would fill the room, and if you have never smelled that scent before, all I have to say is chemo does not make you as sick as the smell of greyhound innards.
I light a candle, and as I settle in my chair, the nurse untangles the airline tubing from the neck of my Lab, and tries to access my vein without hitting the curious dog's nose. The dog helps sterilize my arm with his tongue.
She begins the drip, the dog calms down, and I sit on the couch, playing with iPhone games and chatting with her. I refuse to buy a big, ugly barcalounger but after an hour my back starts to hurt, and I want to change spots. So, I get up, waking the dog, who comes and sniffs the pole and tubing.
Just then, Chuck the mailman comes, and the dog goes ballistic, barking and knocking down the IV pole and tangling up the tubing. The nurse has to replace the tubing and my IV.
I offer her a drink. She wants juice.
Sigh.
I sit back down. The cat meows, wanting water. I get back up to get her some and sit back down again. Kitty comes to sit on my lap and idly bats at the tubing dangling from the pole, and pokes a hole in it.
The nurse replaces it and starts the drip anew.
I look around, and see a tumbleweed of dog hair under the couch. I see dust behind the TV. The fireplace screen needs scrubbing. How did I not notice all that before? I am trapped, I can't get up and clean it now. How frustrating! I hope she doesn't think I'm a slob.
Drip. Drip. Drip.
The kid comes home from school and wants a snack. I get up to get him one, dragging the IV pole behind me, and I get one for the nurse too. The phone rings, and I answer it, only to find out it's work needing a question answered.
I have my arm bent so long from the phone call that the drip stops. The nurse suctions out the air and restarts it.
My husband comes home from work and turns on baseball, a sound I dislike almost as much as the sound of the screeching women on the View. The nurse, though, is a fan, and they chat about baseball and outings and innings, boring me to tears.
Drip. Drip. Drip.
Is it over yet?
~~
In the original story, the guy pushing for chemo at home had to take anxiety medication before his hospital infusion days.
Me?
I'd need anxiety medication to have treatment at home.
Give me a nice, relaxing infusion room any day.
.
A nurse shows up at your door, starts your IV, monitors you in your home. You are surrounded by loving pets and have access to bathroom necessities.
It sounds wonderful, doesn't it?
I began fantasizing about how that would go down in my house.
It's the day before chemo, and I start nagging my family. "Pick up your stuff! Clean the counters! Don't you know the nurse is coming over tomorrow?" No matter how sick and tired I feel, a stranger is coming over, and I can't have them see this mess. I get my my aching, exhausted bones up, inspect the kitchen, wax the hardwood floor, clean the leather couch, and wash my blankets. All the detritus that collected in the house since the last chemo visit three weeks ago; the stuff that comes from living with all males - school books, papers, socks, sweaters, balls, shoes - all that has to be picked up and put away.
I'd better schedule my treatment on Mondays, so I have the weekend to clean.
Of course, I'll have to hit the store. The nurse will want something to drink and it would be rude of me to allow her to sit for hours without offering her an iced tea or a soda. What kind of soda will she like? Should I get sugar-free, just in case? Should I have a variety? And, what if it's a long chemo session - sometimes they take 6 or 7 hours. I'll have to have food too, the poor thing has to eat.
I'd better make a shopping list. I wonder what kind of sandwiches she likes? I make a pretty good chicken salad. I can make fruit salad too, everybody likes that. Or, perhaps a quiche would be better, and salad to go with it.
What if I get a male nurse? Will he eat quiche? I've heard real men don't eat quiche, but then again, these are male nurses, they've already broken one mold. Should I get some salami or something though? I guess I better get a variety, just in case.
I'll shop and clean on Saturday, and Sunday I'll cook.
The nurse might get bored, sitting there with only one patient. It's my house so no daytime TV allowed. The View is banned in my home. But, since I'm going to the store, I will pick up some magazines, so she'll have something to do. What if it's a dude? Maybe he'll like Wired. I should get some Suduku too, most people seem to enjoy that puzzle.
I ask my husband to sweep the front porch and get rid of the spider webs.
It's Monday and time for the nurse to arrive. Having your dogs around you during chemo is lovely. Unless, you happen to have a 125 pound boisterous Labrador Retriever who absolutely LOVES everybody he meets and greets everybody the same way. First, with the traditional crotch sniffing, then with the friendly tail whip, and finally the big smile/drool on pants. My sedate greyhound would look up from his bed, wag his tail, fart, and then take a nap.
The smell of greyhound gas would fill the room, and if you have never smelled that scent before, all I have to say is chemo does not make you as sick as the smell of greyhound innards.
I light a candle, and as I settle in my chair, the nurse untangles the airline tubing from the neck of my Lab, and tries to access my vein without hitting the curious dog's nose. The dog helps sterilize my arm with his tongue.
She begins the drip, the dog calms down, and I sit on the couch, playing with iPhone games and chatting with her. I refuse to buy a big, ugly barcalounger but after an hour my back starts to hurt, and I want to change spots. So, I get up, waking the dog, who comes and sniffs the pole and tubing.
Just then, Chuck the mailman comes, and the dog goes ballistic, barking and knocking down the IV pole and tangling up the tubing. The nurse has to replace the tubing and my IV.
I offer her a drink. She wants juice.
Sigh.
I sit back down. The cat meows, wanting water. I get back up to get her some and sit back down again. Kitty comes to sit on my lap and idly bats at the tubing dangling from the pole, and pokes a hole in it.
The nurse replaces it and starts the drip anew.
I look around, and see a tumbleweed of dog hair under the couch. I see dust behind the TV. The fireplace screen needs scrubbing. How did I not notice all that before? I am trapped, I can't get up and clean it now. How frustrating! I hope she doesn't think I'm a slob.
Drip. Drip. Drip.
The kid comes home from school and wants a snack. I get up to get him one, dragging the IV pole behind me, and I get one for the nurse too. The phone rings, and I answer it, only to find out it's work needing a question answered.
I have my arm bent so long from the phone call that the drip stops. The nurse suctions out the air and restarts it.
My husband comes home from work and turns on baseball, a sound I dislike almost as much as the sound of the screeching women on the View. The nurse, though, is a fan, and they chat about baseball and outings and innings, boring me to tears.
Drip. Drip. Drip.
Is it over yet?
In the original story, the guy pushing for chemo at home had to take anxiety medication before his hospital infusion days.
Me?
I'd need anxiety medication to have treatment at home.
Give me a nice, relaxing infusion room any day.
.
Saturday, July 17, 2010
When a Physican Abandons a Patient...
..what are the ethics involved?
Let me recap my situation for newbies. Pardon my redundancy but I don't want to make people chase links, although I will include them.
Here's the story:
You might be shocked to know I had breast cancer. No, really, I did! Sometimes even I find it hard to believe.
I chose the only reconstruction option a skinny chick like me can have - reconstruction with a tissue expander. After seeing the first plastic surgeon I was referred to, and not liking what I saw of his work, I got a second opinion from Dr. S, who agreed to treat me.
Or so I thought.
At the time of my mastectomy, October 21, 2009, this physician put in expander and did all my subsequent saline fills. I had numerous appointments with him, all of which he canceled and rescheduled. I got my last fill in February, and I was done.
Surgery to exchange the expander for an implant wasn't scheduled until June 8th. I prepared myself mentally for my final results, and was eager to at least be comfortable, as the expander, to say the least, is not.
The evening of June 7th, excited yet nervous for my upcoming surgery, I put a scopolamine patch behind my ear as I was instructed, and went to bed. My husband, who had taken the day off work, got up with me at 5:30 a.m. I was dizzy and light-headed from the drug, and of course, didn't eat. We arrived at the hospital by 6:30 a.m. My husband left to go home and take our son to school, and then came back.
I undressed. An IV was started. My blood pressure was taken. I was placed in a hospital bed.
And there I sat, dozing and dopey from the drug, for four hours.
At 10:00 a.m., hours after my surgery was to take place, Dr. S came in and told me that my implants had never arrived and surgery was off. Ominously (in retrospect), he said that was the reason he preferred to do operations in his own surgical center, to prevent these kinds of problems. (I couldn't go to his surgical center for insurance reasons.)
A couple of days and another canceled appointment later, he told me over the phone that he was not going to be my doctor anymore. He said it was nothing I had done, but he had decided not to do reconstructions any longer, which I took to mean he didn't want to deal with insurance companies anymore.
I was upset, naturally, but I wished him good health and accepted the decision. After the hospital fiasco, I felt it might even be for the best.
He verbally referred me to another plastic surgeon, Combat Doctor, and said he had spoken to her that weekend and she agreed to take me, and he had cleared it with my insurance. I was told to call immediately - which I did - and she'd get me right in.
When I called, I discovered that she had broken her pelvis, which, amazingly, she had failed to mention to Dr. S. Her office gave me an appointment for six weeks down the road, July 27th, when she was expected to have healed. They told me surgeries were backed up past October, which sent me into a funk.
I was clearly not getting this expander out of me any time soon.
Two weeks ago, her office canceled our appointment. She is not better.
And, of course, I feel bad for her. She has a terrible injury and I know that it's no fun.
Her office offered me an appointment with her partner. They said he was a "wonderful doctor." Googling, I see he graduated med school just a few years ago and does not have her breadth of experience. But, I am ready to get this expander out of me, and maybe he knows some new tricks. I like young people. I set up an appointment to at least meet him on July 30th.
In the mail today, I received a letter from my insurance company, which said, and I paraphrase, that they have not received enough information for me to see this new doctor. They don't have my full clinical history. My old plastic surgeon has 45 days to comply with their request or I will be denied care.
I might remind you, they said they had taken care of this right after June 8th.
Now, I don't think a doctor should be forced to treat a patient if he doesn't want to. However, I wasn't an abusive patient. I complied with all instructions. He canceled many appointments with me - I never canceled one with him. I never complained - in fact, his office staff liked me well enough to get me some free Latisse.
I was so understanding that in the hospital, on that fateful day, that when he apologized my response was, "Don't apologize, it's not your fault, things happen." At the time, I assumed it was the hospital's mistake.
But, honestly, is it the truth that it's not his fault? He is the physician. Shouldn't he have been the one responsible for making sure that my implants had arrived before surgery that day? Should surgery even have been scheduled until they arrived?
The physician/patient one is not equal. We are not at a cocktail party where he can notice my breath is bad, decide not to talk to me anymore, and just walk away. He has an obligation - has even taken an oath - to see that I am taken care of once he accepts me as a patient, doesn't he? Even if he decides he only wants to take cash patients in his own surgical center - shouldn't he have seen to it that he referred me to a doctor who was functional?
I depended on his knowledge, and I foolishly trusted him. I was going to allow him to cut me open, flay my muscles, restore my appearance. I believed him when he said I would not be perfectly happy with my appearance but that he would do the best he could. I undressed in front of him, allowed him to take photos, touch my breasts. I gave him intimate information and had faith he would care for it all.
And, for me.
And, he abandoned me for money, and has left me without care. It has been 38 days since I was supposed to have surgery and 6 months since my body was ready to have it - and the insurance company still doesn't have the information they need. If I have a problem; if the expander becomes infected, if it becomes damaged - I have no doctor to treat me. The expander has been in for ten months already and my last fill was in February. The valve is pushing through the skin, and is causing me discomfort, and I have permanent bruising. I cannot have MRIs, or fly without setting off an alarm, or have any other medical tests on my formerly cancerous side, and I should be doing that every six months.
I looked up the term patient abandonment. Patient abandonment is described as the unilateral withdrawal by a physician from a patient's care without first formally transferring that care to another qualified physician who is acceptable to the patient. I have been without medical care now since June 8th. Combat Doctor is certainly qualified - but she isn't functional. I believe the doctor thought he transferred my care to another doctor, but like with the missing implants, he didn't have any kind of follow-up. (Yes, I did call his office staff and tell them.)
I've never received any kind of letter or medical records or anything from this doctor. All I got was a phone call firing me - a call which I initiated.
Most women who had mastectomies the same time that I did have completed their reconstructive surgeries and have been able to get on with their lives by now.
And, I'm still waiting. In limbo. And, in discomfort.
My plan is not to do anything legally so no suggestions about that. I am not medically harmed, but I am living in discomfort much longer than I should have.
I am just curious as to whether this situation violates any medical ethics, or is normal.
Doctors, what do you think?
Let me recap my situation for newbies. Pardon my redundancy but I don't want to make people chase links, although I will include them.
Here's the story:
You might be shocked to know I had breast cancer. No, really, I did! Sometimes even I find it hard to believe.
I chose the only reconstruction option a skinny chick like me can have - reconstruction with a tissue expander. After seeing the first plastic surgeon I was referred to, and not liking what I saw of his work, I got a second opinion from Dr. S, who agreed to treat me.
Or so I thought.
At the time of my mastectomy, October 21, 2009, this physician put in expander and did all my subsequent saline fills. I had numerous appointments with him, all of which he canceled and rescheduled. I got my last fill in February, and I was done.
Surgery to exchange the expander for an implant wasn't scheduled until June 8th. I prepared myself mentally for my final results, and was eager to at least be comfortable, as the expander, to say the least, is not.
The evening of June 7th, excited yet nervous for my upcoming surgery, I put a scopolamine patch behind my ear as I was instructed, and went to bed. My husband, who had taken the day off work, got up with me at 5:30 a.m. I was dizzy and light-headed from the drug, and of course, didn't eat. We arrived at the hospital by 6:30 a.m. My husband left to go home and take our son to school, and then came back.
I undressed. An IV was started. My blood pressure was taken. I was placed in a hospital bed.
And there I sat, dozing and dopey from the drug, for four hours.
At 10:00 a.m., hours after my surgery was to take place, Dr. S came in and told me that my implants had never arrived and surgery was off. Ominously (in retrospect), he said that was the reason he preferred to do operations in his own surgical center, to prevent these kinds of problems. (I couldn't go to his surgical center for insurance reasons.)
A couple of days and another canceled appointment later, he told me over the phone that he was not going to be my doctor anymore. He said it was nothing I had done, but he had decided not to do reconstructions any longer, which I took to mean he didn't want to deal with insurance companies anymore.
I was upset, naturally, but I wished him good health and accepted the decision. After the hospital fiasco, I felt it might even be for the best.
He verbally referred me to another plastic surgeon, Combat Doctor, and said he had spoken to her that weekend and she agreed to take me, and he had cleared it with my insurance. I was told to call immediately - which I did - and she'd get me right in.
When I called, I discovered that she had broken her pelvis, which, amazingly, she had failed to mention to Dr. S. Her office gave me an appointment for six weeks down the road, July 27th, when she was expected to have healed. They told me surgeries were backed up past October, which sent me into a funk.
I was clearly not getting this expander out of me any time soon.
Two weeks ago, her office canceled our appointment. She is not better.
And, of course, I feel bad for her. She has a terrible injury and I know that it's no fun.
Her office offered me an appointment with her partner. They said he was a "wonderful doctor." Googling, I see he graduated med school just a few years ago and does not have her breadth of experience. But, I am ready to get this expander out of me, and maybe he knows some new tricks. I like young people. I set up an appointment to at least meet him on July 30th.
In the mail today, I received a letter from my insurance company, which said, and I paraphrase, that they have not received enough information for me to see this new doctor. They don't have my full clinical history. My old plastic surgeon has 45 days to comply with their request or I will be denied care.
I might remind you, they said they had taken care of this right after June 8th.
Now, I don't think a doctor should be forced to treat a patient if he doesn't want to. However, I wasn't an abusive patient. I complied with all instructions. He canceled many appointments with me - I never canceled one with him. I never complained - in fact, his office staff liked me well enough to get me some free Latisse.
I was so understanding that in the hospital, on that fateful day, that when he apologized my response was, "Don't apologize, it's not your fault, things happen." At the time, I assumed it was the hospital's mistake.
But, honestly, is it the truth that it's not his fault? He is the physician. Shouldn't he have been the one responsible for making sure that my implants had arrived before surgery that day? Should surgery even have been scheduled until they arrived?
The physician/patient one is not equal. We are not at a cocktail party where he can notice my breath is bad, decide not to talk to me anymore, and just walk away. He has an obligation - has even taken an oath - to see that I am taken care of once he accepts me as a patient, doesn't he? Even if he decides he only wants to take cash patients in his own surgical center - shouldn't he have seen to it that he referred me to a doctor who was functional?
I depended on his knowledge, and I foolishly trusted him. I was going to allow him to cut me open, flay my muscles, restore my appearance. I believed him when he said I would not be perfectly happy with my appearance but that he would do the best he could. I undressed in front of him, allowed him to take photos, touch my breasts. I gave him intimate information and had faith he would care for it all.
And, for me.
And, he abandoned me for money, and has left me without care. It has been 38 days since I was supposed to have surgery and 6 months since my body was ready to have it - and the insurance company still doesn't have the information they need. If I have a problem; if the expander becomes infected, if it becomes damaged - I have no doctor to treat me. The expander has been in for ten months already and my last fill was in February. The valve is pushing through the skin, and is causing me discomfort, and I have permanent bruising. I cannot have MRIs, or fly without setting off an alarm, or have any other medical tests on my formerly cancerous side, and I should be doing that every six months.
I looked up the term patient abandonment. Patient abandonment is described as the unilateral withdrawal by a physician from a patient's care without first formally transferring that care to another qualified physician who is acceptable to the patient. I have been without medical care now since June 8th. Combat Doctor is certainly qualified - but she isn't functional. I believe the doctor thought he transferred my care to another doctor, but like with the missing implants, he didn't have any kind of follow-up. (Yes, I did call his office staff and tell them.)
I've never received any kind of letter or medical records or anything from this doctor. All I got was a phone call firing me - a call which I initiated.
Most women who had mastectomies the same time that I did have completed their reconstructive surgeries and have been able to get on with their lives by now.
And, I'm still waiting. In limbo. And, in discomfort.
My plan is not to do anything legally so no suggestions about that. I am not medically harmed, but I am living in discomfort much longer than I should have.
I am just curious as to whether this situation violates any medical ethics, or is normal.
Doctors, what do you think?
Wednesday, July 14, 2010
Bloggers at Parties
I've been blogging on a variety of topics for many years, and until now, the only thing I've gained is a bit of short-lived notoriety (from a blog long ago and far away, and no, I don't want to talk about it) and a few bucks in Amazon referral fees.
(Is this a good time to remind you that my search box is to the right? --->)
Confession: I have written professionally before. I have ghost-written a book, been published in national magazines and had a weekly column on the topic of radio. So, I'm not blogging because I'm a frustrated, unpublished writer.
Blogging, for me, is truly a labor of love, and one of my favorite ways to write.
Probably because I have no word count limit.
Sorry about that.
My first thought after my breast cancer diagnosis was, "I have to blog this experience". I confess that I didn't turn to friends, or family, join a support group, or cry. I suspect that puts me into some weird, anti-social computer geek category.
So be it. I did spend several years working as an IT manager, so I come by it honestly.
Despite my love for, and heavy involvement in New Media, I am a rare breed - I still love Old Media. I have been a subscriber to the Sacramento Bee for my entire life, and I can't imagine starting my morning without coffee and the Bee. I rarely agree with their editorial team, (okay, never agree) but I still enjoy the viewpoint. And, what would life be like without Carolyn Hax and her antiquated counterpart, Dear Abby? It's not only the Bee I read; whenever I travel, I grab the newspaper. I believe the local paper gives you insight into a city.
I can't imagine the joy some people take in the demise of newspapers. I don't share it.
So, when the Bee accepted me as one of their blogging partners, I was truly honored. Of course, I suspected that being called a Partner with the Bee was the same thing as a Wal-Mart employee being called an Associate. That employee bagging your $5.00 DVD is never going to associate with Sam Walton, and I figured I wasn't really ever going to have anything to do with the Bee. I thought we may drive each other traffic with the toolbar (mostly them to me), and it would be a cool marriage between old and new media as well as a unique experiment in linking community writers with a legitimate newspaper - and that would be the end of it.
I was wrong. Two weeks ago, The Sacramento Bee graciously hosted a mixer for their Sacramento Connect partners. And, they treated us iPhone carrying, nerdish bloggers like actual important people. We met at Revolution Wines, where we could taste some great grape - a nice change from all that Mountain Dew we drink.. They had some amazing appetizers from I don't even know where. And, more importantly, they wanted to hear our opinion about how to make this partner connection work.
I even got to meet Melanie Sill, the Editor and Senior Vice President of the Bee. Amazingly, she said she'd read my blog and shared it with others. I was impressed they weren't sending in janitors and secretaries and paying them overtime to meet us, and that the powers-that-bee had actually looked at our content.
Because I'm a stereotypical computer geek/writer, I'm not great in crowds of strangers. My first instinct is to hide in a corner and observe what's going on, and my second instinct is to go find any computer AV system around to see if there is anything cool that I don't have.
I resisted both temptations, because I'm an adult and there to socialize, and I had chemotherapy, so if I can do that, I can do anything, including meet new people, right?
Unfortunately, chemotherapy doesn't kill the nerd inside. The first awkward part of the evening came as I entered the room and I was handed a nametag. I have never liked these things because there is really no graceful way for a woman to wear them if she isn't wearing a jacket with lapels. You kind of have to slap it on your boob, and as you know, boobs are slightly problematic for me at this point.
My dilemma: Do I put it on my real side with my prosthesis, or my expanded side? Which one would I least want people peering down at? I assumed that a few people might know my story, and I worried - would this create a problem for anybody? Would they read my nametag and wonder: real side? fake? Would they be embarrassed?
I wanted to take a pen and draw an arrow and write "It's this one" on it, but instead, I slapped it on my expanded side and entered the room.
This was also my entree into social life with gray/white hair. I had shoulder length auburn hair until chemo took it away. Now, I have silver man-hair. Would people think I'm a little old lady? Would they ignore me due to my advancing age? Would I become invisible, as the elderly are wont to do?
All those times I silently called somebody a "blue hair" as I sped by them in traffic came back to haunt me.
Not only did I worry that they might ignore me, I worried about how could I ignore them? I couldn't peer at people through a veil of hair as I used to do Like an Afghanistan woman whose burqa blows up in a wind storm, with this super-short do, I feel fully exposed and in danger.
Of course, my new mantra of courage is "I've been through cancer treatment, this is nothing" so I went to the appetizer table, and met a nice young man, owner of Bleed Black and Purple, my alphabet neighbor in the partner listing. His pretty wife does graphic design and we talked about that a bit, and she has designed some business cards for me, which I will post as soon as I get them.
I had wanted to meet the author of Nanny Goats in Panties. She writes a humor blog and she knows her blogging stuff. I have always hated going up to people and introducing myself, and she was talking to a group of two lovely women, but I took my courage in my hands and went to say hi.
And then, my next awkward moment happened.
Immediately after I introduced myself, one of the women said they'd noticed me and how slim I was.
Of course, this was a blogging event, and you all know the topic of my blog. So, I joked, "Oh, well, I just had cancer."
Geek in da hizzy!
Their faces fell and they looked stricken. I realized my mistake immediately. "Oh, I'm so sorry, I'm just kidding, I'm fine. I've always been skinny. I was a skinny baby!"
Too late. They started inching away, and I realized they probably had no idea I wrote a humor blog about breast cancer.
I'd forgotten the cardinal rule: Cancer isn't funny.
Lesson learned.
.
(Is this a good time to remind you that my search box is to the right? --->)
Confession: I have written professionally before. I have ghost-written a book, been published in national magazines and had a weekly column on the topic of radio. So, I'm not blogging because I'm a frustrated, unpublished writer.
Blogging, for me, is truly a labor of love, and one of my favorite ways to write.
Probably because I have no word count limit.
Sorry about that.
My first thought after my breast cancer diagnosis was, "I have to blog this experience". I confess that I didn't turn to friends, or family, join a support group, or cry. I suspect that puts me into some weird, anti-social computer geek category.
So be it. I did spend several years working as an IT manager, so I come by it honestly.
Despite my love for, and heavy involvement in New Media, I am a rare breed - I still love Old Media. I have been a subscriber to the Sacramento Bee for my entire life, and I can't imagine starting my morning without coffee and the Bee. I rarely agree with their editorial team, (okay, never agree) but I still enjoy the viewpoint. And, what would life be like without Carolyn Hax and her antiquated counterpart, Dear Abby? It's not only the Bee I read; whenever I travel, I grab the newspaper. I believe the local paper gives you insight into a city.
I can't imagine the joy some people take in the demise of newspapers. I don't share it.
So, when the Bee accepted me as one of their blogging partners, I was truly honored. Of course, I suspected that being called a Partner with the Bee was the same thing as a Wal-Mart employee being called an Associate. That employee bagging your $5.00 DVD is never going to associate with Sam Walton, and I figured I wasn't really ever going to have anything to do with the Bee. I thought we may drive each other traffic with the toolbar (mostly them to me), and it would be a cool marriage between old and new media as well as a unique experiment in linking community writers with a legitimate newspaper - and that would be the end of it.
I was wrong. Two weeks ago, The Sacramento Bee graciously hosted a mixer for their Sacramento Connect partners. And, they treated us iPhone carrying, nerdish bloggers like actual important people. We met at Revolution Wines, where we could taste some great grape - a nice change from all that Mountain Dew we drink.. They had some amazing appetizers from I don't even know where. And, more importantly, they wanted to hear our opinion about how to make this partner connection work.
I even got to meet Melanie Sill, the Editor and Senior Vice President of the Bee. Amazingly, she said she'd read my blog and shared it with others. I was impressed they weren't sending in janitors and secretaries and paying them overtime to meet us, and that the powers-that-bee had actually looked at our content.
Because I'm a stereotypical computer geek/writer, I'm not great in crowds of strangers. My first instinct is to hide in a corner and observe what's going on, and my second instinct is to go find any computer AV system around to see if there is anything cool that I don't have.
I resisted both temptations, because I'm an adult and there to socialize, and I had chemotherapy, so if I can do that, I can do anything, including meet new people, right?
Unfortunately, chemotherapy doesn't kill the nerd inside. The first awkward part of the evening came as I entered the room and I was handed a nametag. I have never liked these things because there is really no graceful way for a woman to wear them if she isn't wearing a jacket with lapels. You kind of have to slap it on your boob, and as you know, boobs are slightly problematic for me at this point.
My dilemma: Do I put it on my real side with my prosthesis, or my expanded side? Which one would I least want people peering down at? I assumed that a few people might know my story, and I worried - would this create a problem for anybody? Would they read my nametag and wonder: real side? fake? Would they be embarrassed?
I wanted to take a pen and draw an arrow and write "It's this one" on it, but instead, I slapped it on my expanded side and entered the room.
This was also my entree into social life with gray/white hair. I had shoulder length auburn hair until chemo took it away. Now, I have silver man-hair. Would people think I'm a little old lady? Would they ignore me due to my advancing age? Would I become invisible, as the elderly are wont to do?
All those times I silently called somebody a "blue hair" as I sped by them in traffic came back to haunt me.
Not only did I worry that they might ignore me, I worried about how could I ignore them? I couldn't peer at people through a veil of hair as I used to do Like an Afghanistan woman whose burqa blows up in a wind storm, with this super-short do, I feel fully exposed and in danger.
Of course, my new mantra of courage is "I've been through cancer treatment, this is nothing" so I went to the appetizer table, and met a nice young man, owner of Bleed Black and Purple, my alphabet neighbor in the partner listing. His pretty wife does graphic design and we talked about that a bit, and she has designed some business cards for me, which I will post as soon as I get them.
I had wanted to meet the author of Nanny Goats in Panties. She writes a humor blog and she knows her blogging stuff. I have always hated going up to people and introducing myself, and she was talking to a group of two lovely women, but I took my courage in my hands and went to say hi.
And then, my next awkward moment happened.
Immediately after I introduced myself, one of the women said they'd noticed me and how slim I was.
Of course, this was a blogging event, and you all know the topic of my blog. So, I joked, "Oh, well, I just had cancer."
Geek in da hizzy!
Their faces fell and they looked stricken. I realized my mistake immediately. "Oh, I'm so sorry, I'm just kidding, I'm fine. I've always been skinny. I was a skinny baby!"
Too late. They started inching away, and I realized they probably had no idea I wrote a humor blog about breast cancer.
I'd forgotten the cardinal rule: Cancer isn't funny.
Lesson learned.
.
Tuesday, July 13, 2010
Blogging with Breast Cancer
I was interviewed for an article put out by the National Institute of Health. You can read about the power of blogging with cancer.
I liked her take on the subject, and I especially liked the link back to me.
I liked her take on the subject, and I especially liked the link back to me.
Benign is the most lyrical word in the language
I have a 4 cm cyst, and sitting on top of that, is a brand new 1.8 cm cyst that wasn't there before.
My farm is still productive.
They brought me into the mammography room and showed me my the mammogram from my sole, lonely breast taken last year, and the mammogram they took last week. They looked like different breasts. The old one was very white, very dense. The new one had just a few spots of white and mostly black. Tamoxifen has changed the density of my breasts, and things they couldn't see before are now quite visible.
The lump they had circled on the mammogram that didn't look very scary, even to my untrained eye. That was what they were concerned about. I immediately relaxed.
They took their films, and then to be certain of what they'd seen, they did the sonogram. I can read cysts on a sonogram and was pleased to see them pop into view. One sitting on top of the other gave the asymmetrical shape noted in the pathology report, I assume.
Also, the techs were discussing how difficult it is to spell asymmetrical, which cracked me up.
I'm pleased to say that I'm still on the recovery track, not the starting all over with a new cancer track.
I can go back to complaining about not having a plastic surgeon rather than having weird mammograms.
Whew.
My farm is still productive.
They brought me into the mammography room and showed me my the mammogram from my sole, lonely breast taken last year, and the mammogram they took last week. They looked like different breasts. The old one was very white, very dense. The new one had just a few spots of white and mostly black. Tamoxifen has changed the density of my breasts, and things they couldn't see before are now quite visible.
The lump they had circled on the mammogram that didn't look very scary, even to my untrained eye. That was what they were concerned about. I immediately relaxed.
They took their films, and then to be certain of what they'd seen, they did the sonogram. I can read cysts on a sonogram and was pleased to see them pop into view. One sitting on top of the other gave the asymmetrical shape noted in the pathology report, I assume.
Also, the techs were discussing how difficult it is to spell asymmetrical, which cracked me up.
I'm pleased to say that I'm still on the recovery track, not the starting all over with a new cancer track.
I can go back to complaining about not having a plastic surgeon rather than having weird mammograms.
Whew.
The Big Day
Today, I have my diagnostic tests to find out if I have cancer in my remaining breast.
Or, maybe I should say, to find out that I don't have cancer in my remaining breast.
It's always good to frame your words positively.
All cancer patients wish they could see into the future during these anxiety-producing test times, and I'm no exception. What is going to happen to me is the defining question of our lives. So, after countless hours online, searching for stories of those who had new cancers diagnosed 3 months after chemo, of reading stories of recurrence and herceptin failure - and mostly stories of false-positives and relief, I decided to get a definitive answer to my future.
There was only one place to turn:
Or, maybe I should say, to find out that I don't have cancer in my remaining breast.
It's always good to frame your words positively.
All cancer patients wish they could see into the future during these anxiety-producing test times, and I'm no exception. What is going to happen to me is the defining question of our lives. So, after countless hours online, searching for stories of those who had new cancers diagnosed 3 months after chemo, of reading stories of recurrence and herceptin failure - and mostly stories of false-positives and relief, I decided to get a definitive answer to my future.
There was only one place to turn:
Could there be a more accurate 8-ball reading?
Wait. It's what's for dinner.
And, it may not be over today. It is possible I won't know more after my appointments than I do right now. If the test shows it's definitely benign, I should know that. If it shows definite cancer, I should know that as well. It could be indeterminate, and then I will have to wait for a biopsy to know for certain. It's true that until those cells are on a slide, there is no way to know for sure. But, in some cases, it's very clear. If he sees a spiculated mass - well, there isn't much else that causes that than cancer, to my knowledge. It was a radiologist who told me the first time around, and a biopsy confirmed what he already knew.
I will tweet anything I hear today, so check my twitter feed on the right for an immediate update.
Thanks to all who have wished me luck - I appreciate it.
Sunday, July 11, 2010
Mechanics of Fear
I go up and down, cycling between fear and confidence. One hour, I'm terrified, thinking that bad mammogram means I have a new cancer. I wonder how I can possibly do this again. I worry about my job, knowing I can't put my workplace through another 3 month absence for a second year in a row. I wonder why chemo doesn't work for me. I become certain the bone pain I'm experiencing isn't tamoxifen side effects, but metastases.
The next hour, I realize that my odds of having a second cancer are still low. I know that once you've had cancer, they check every little mammography shadow. I remind myself that I just finished chemo and am still on herceptin and it would be exceedingly rare for me to have a new cancer now, before treatment has even ended. I calm down.
Soon, my nerves bubble up again, I have another bout of doubt and I let my imagination go wild. Not only do I have a new primary, I think, but this time it's spread. I decide to write my obituary myself, and I think I'd better do my own funeral arrangements so nobody else has to. I wonder whether hospice at a facility would be better than hospice at home for my family's mental sake. I feel sad for my youngest son who will lose his mother at such an early age and hope it doesn't affect him for life. I wonder if I can talk my older son into knocking up his girlfriend quick so I can at least meet my grandbaby.
Of course, I'm a rational person and I quickly go back to reality and realize I won't be planning any funerals, and won't I feel silly about that thought when I hear that the "area of concern" they saw was a lipoma, or a cyst, which is what the odds say it is? I stop worrying.
I wonder how long my dog will be sad without me. A week? Two?
I remember that my doctor said it was probably benign.
I wonder if I should buy an iPhone 4 now, even though it's not upgrade time. Who knows how long I'll have to use it? Should I also go to Disneyland and Hawaii?
I take comfort that I had an MRI a year ago that showed nothing, and a sonogram to drain cysts a few months ago also showed nothing. Cancer doesn't grow that fast, the odds are with me.
This is exactly why they call cancer a roller coaster ride. And, I am not alone on that coaster. Millions of people who have had cancer - breast and otherwise - live with this fear of recurrence, new primaries or mets.
For some, each ache is a possible symptom and they start the ride. For others, like me, I had to have a negative test to start the wheels spinning. But, we are all brothers and sisters in that we all go through these times of fear and doubt.
We all agree that the fear of the unknown is the worst. I will be happy when Tuesday comes, and I can stop the roller coaster.
At least, for now.
The next hour, I realize that my odds of having a second cancer are still low. I know that once you've had cancer, they check every little mammography shadow. I remind myself that I just finished chemo and am still on herceptin and it would be exceedingly rare for me to have a new cancer now, before treatment has even ended. I calm down.
Soon, my nerves bubble up again, I have another bout of doubt and I let my imagination go wild. Not only do I have a new primary, I think, but this time it's spread. I decide to write my obituary myself, and I think I'd better do my own funeral arrangements so nobody else has to. I wonder whether hospice at a facility would be better than hospice at home for my family's mental sake. I feel sad for my youngest son who will lose his mother at such an early age and hope it doesn't affect him for life. I wonder if I can talk my older son into knocking up his girlfriend quick so I can at least meet my grandbaby.
Of course, I'm a rational person and I quickly go back to reality and realize I won't be planning any funerals, and won't I feel silly about that thought when I hear that the "area of concern" they saw was a lipoma, or a cyst, which is what the odds say it is? I stop worrying.
I wonder how long my dog will be sad without me. A week? Two?
I remember that my doctor said it was probably benign.
I wonder if I should buy an iPhone 4 now, even though it's not upgrade time. Who knows how long I'll have to use it? Should I also go to Disneyland and Hawaii?
I take comfort that I had an MRI a year ago that showed nothing, and a sonogram to drain cysts a few months ago also showed nothing. Cancer doesn't grow that fast, the odds are with me.
This is exactly why they call cancer a roller coaster ride. And, I am not alone on that coaster. Millions of people who have had cancer - breast and otherwise - live with this fear of recurrence, new primaries or mets.
For some, each ache is a possible symptom and they start the ride. For others, like me, I had to have a negative test to start the wheels spinning. But, we are all brothers and sisters in that we all go through these times of fear and doubt.
We all agree that the fear of the unknown is the worst. I will be happy when Tuesday comes, and I can stop the roller coaster.
At least, for now.
Friday, July 9, 2010
Speaking of stinkin'
Tamoxifen causes sleep disturbances, so it's been a while since I've gotten a good night's rest. Naturally, I became extremely annoyed when I was awakened from a rare deep sleep in the middle of the night to the sounds of my neighbor's dog barking.
"Why don't people leave their dog inside at night, like I do," I thought.
I dozed off again but deep sleep was elusive. Soon, I began smelling an overwhelming scent - a combination of burning tires and skunk. Calling it "skunk smell" doesn't cut it. This smell deserves it's own category in the world of scents, like that Japanese flavor, Umami, has in the world of foods. It fouled my room, my bed, what was left of my sleep. It was thick and heavy and oppressive. I heard my husband move and I said, "Do you smell that?" "Yes," he said. "Skunk." He, too, had been awakened by the smell.
That should tell you how strong the smell was - this is the man who can't smell spoiled food, a fire down the street, or my expensive perfume. (He buys it for me anyway, the dear man.)
Then I heard my dog, a greyhound, howling at the back door. It wasn't a neighbor's dog barking after all, it was mine. Oops.
I went to let him in and opened up the back door. I saw him through the screen, looking up at me, tail wagging, eyes bright. And, the stench was overpowering. Horrible. Like a thousand infusions of Zometa.
I closed the door.
Clearly, my dog had been playing with skunks.
I figured it wouldn't hurt the dog to be outside for one night, and I'd clean him in the morning. I tried to get back sleep but it was impossible. I have smelled a thousand skunks in my day. I've driven by them dead on the road and they can smell my car up for a mile.
That is nothing compared to having it on your very own personal dog.
Still, I tried to sleep. I had many things I wanted to do to prepare for company this weekend. I sprayed my bedroom with Glade, and covered my face with my sheet.
The dog continued to whine, and I started to worry he might have been hurt by the skunk. I knew I'd better check him, and to check him I'd have to clean him. I was getting up.
I grabbed my iPhone, googled "dog skunk" and saw some home remedies - one involving hydrogen peroxide, which we didn't have, and one involving Murphy's Oil Soup, which we did.
So, 4:30 in the morning, my husband and I got up to wash the dog. If the Murphy's Oil Soap didn't work, husband was going to get the peroxide from the store.
I got some rubber gloves, left over from my low white count days (I wouldn't touch a filthy sponge without wearing them), and a rag, filled a bucket with soap and went outside into the dark.
And, at 4:30 in the morning, I washed the dog.
After drying him off, I sniffed him and he seemed better, so I let him in. My husband stayed up, and I went back to bed. I sprayed my room again, but to no avail. I dozed an hour or two and then got up, stomach turning from the stench.
I had four months of chemo without any nausea - all it took was one skunk to make me hurl.
I went to Rite Aide and bought hydrogen peroxide and baking soda. It was in the store that I realized that not only did my dog reek, but I did as well. I apologized to everybody around me, and went home to give my dog another bath..
His bedding is in the wash but I fear his dog bed will have to go. I don't let dogs on the furniture but greyhounds need something soft, so I actually use a crib mattress for his bed. I guess I'll be buying a new one today.
It still smells in here and I suspect it will for a while. He still smells - it appears to be in his ears and on his head. I bought something called "tecnu
" which is also supposed to help, but it will require another bath.
Considering he is lying on his stripped bed, shaking from the trauma of two baths in one day, I think I'll give him a short break. Greyhounds tend to the wimpier side of life.
Now, if you'll excuse me, I think I'll go shower.
Again.
"Why don't people leave their dog inside at night, like I do," I thought.
I dozed off again but deep sleep was elusive. Soon, I began smelling an overwhelming scent - a combination of burning tires and skunk. Calling it "skunk smell" doesn't cut it. This smell deserves it's own category in the world of scents, like that Japanese flavor, Umami, has in the world of foods. It fouled my room, my bed, what was left of my sleep. It was thick and heavy and oppressive. I heard my husband move and I said, "Do you smell that?" "Yes," he said. "Skunk." He, too, had been awakened by the smell.
That should tell you how strong the smell was - this is the man who can't smell spoiled food, a fire down the street, or my expensive perfume. (He buys it for me anyway, the dear man.)
Then I heard my dog, a greyhound, howling at the back door. It wasn't a neighbor's dog barking after all, it was mine. Oops.
I went to let him in and opened up the back door. I saw him through the screen, looking up at me, tail wagging, eyes bright. And, the stench was overpowering. Horrible. Like a thousand infusions of Zometa.
I closed the door.
Clearly, my dog had been playing with skunks.
I figured it wouldn't hurt the dog to be outside for one night, and I'd clean him in the morning. I tried to get back sleep but it was impossible. I have smelled a thousand skunks in my day. I've driven by them dead on the road and they can smell my car up for a mile.
That is nothing compared to having it on your very own personal dog.
Still, I tried to sleep. I had many things I wanted to do to prepare for company this weekend. I sprayed my bedroom with Glade, and covered my face with my sheet.
The dog continued to whine, and I started to worry he might have been hurt by the skunk. I knew I'd better check him, and to check him I'd have to clean him. I was getting up.
I grabbed my iPhone, googled "dog skunk" and saw some home remedies - one involving hydrogen peroxide, which we didn't have, and one involving Murphy's Oil Soup, which we did.
So, 4:30 in the morning, my husband and I got up to wash the dog. If the Murphy's Oil Soap didn't work, husband was going to get the peroxide from the store.
I got some rubber gloves, left over from my low white count days (I wouldn't touch a filthy sponge without wearing them), and a rag, filled a bucket with soap and went outside into the dark.
And, at 4:30 in the morning, I washed the dog.
After drying him off, I sniffed him and he seemed better, so I let him in. My husband stayed up, and I went back to bed. I sprayed my room again, but to no avail. I dozed an hour or two and then got up, stomach turning from the stench.
I had four months of chemo without any nausea - all it took was one skunk to make me hurl.
I went to Rite Aide and bought hydrogen peroxide and baking soda. It was in the store that I realized that not only did my dog reek, but I did as well. I apologized to everybody around me, and went home to give my dog another bath..
His bedding is in the wash but I fear his dog bed will have to go. I don't let dogs on the furniture but greyhounds need something soft, so I actually use a crib mattress for his bed. I guess I'll be buying a new one today.
It still smells in here and I suspect it will for a while. He still smells - it appears to be in his ears and on his head. I bought something called "tecnu
" which is also supposed to help, but it will require another bath.Considering he is lying on his stripped bed, shaking from the trauma of two baths in one day, I think I'll give him a short break. Greyhounds tend to the wimpier side of life.
Now, if you'll excuse me, I think I'll go shower.
Again.
Thursday, July 8, 2010
Let them biopsy you
The phone just rang, and guess who was on the other end?
Rockstar Raja. (My breast surgeon, for you newbies.)
"Why, doctor, how nice of you to call! How are you?"
"I'm fine," he said. "How are you?"
"Well, doctor, you tell me!" I laughed.
He had been calling to give me the bad news about the mammogram, not realizing that I knew about it already. I let him off the hook, telling him I knew, and that I had an appointment for more imaging next Tuesday.
I did say, "What do you see in the report, anything suspicious?
He replied, "It's probably benign, but let them biopsy you."
Will do.
Wait, what? I need a biopsy?
I like that doctor, calling me himself. If anybody is going to lop off my other breast, it's going to be him.
Rockstar Raja. (My breast surgeon, for you newbies.)
"Why, doctor, how nice of you to call! How are you?"
"I'm fine," he said. "How are you?"
"Well, doctor, you tell me!" I laughed.
He had been calling to give me the bad news about the mammogram, not realizing that I knew about it already. I let him off the hook, telling him I knew, and that I had an appointment for more imaging next Tuesday.
I did say, "What do you see in the report, anything suspicious?
He replied, "It's probably benign, but let them biopsy you."
Will do.
Wait, what? I need a biopsy?
I like that doctor, calling me himself. If anybody is going to lop off my other breast, it's going to be him.
I don't need no stinkin' doctors
Last night, I decided to get to the bottom of the 1.6 cm focus of asymmetry. I did a breast self exam like no other. It was the champion of BSE's - the Mohammad Ali of exams. I stood straight up, put my arm over my head, and felt every single inch (I mean centimeter) of my remaining breast. I laid down, and poked around in there like a boy digging for worms. I even leaned forward to see if I could jiggle anything loose. I squeezed, I prodded, I patted, I probed, I smoothed.
And, I felt nothing.
Nothing that is, but a couple of cysts that have been there the whole time, and who I know well.
A 1.6 cm cancer would have to be palpable. That's 2/3rds of an inch. Lots of woman find cancers by feel that are smaller than that. Despite the fact that my last cancer was jumping up and down and trying to get my attention, I still know what a smaller, shyer one would feel like.
So, after an exhaustive study, I have concluded that there is nothing in there.
Besides, no cancer can live in my body now, I've been poisoned, and all hormones removed.
My official diagnosis is a cyst that got caught up the wrong way in their infernal paddles and gave an asymmetrical appearance on the imaging studies.
B-9.
In the future, I won't be calling my doctor and asking for a "routine" mammogram. The days of my breasts combined with the word routine are over. I will go straight to the diagnostics. If I have to say I feel a lump, it won't be a total lie. There are always going to be cysts in there. Lesson learned.
All I need now is to be told officially that my breast is empty.
Ah, the roller coaster that is life with cancer.
Now I better go focus on something else.
And, I felt nothing.
Nothing that is, but a couple of cysts that have been there the whole time, and who I know well.
A 1.6 cm cancer would have to be palpable. That's 2/3rds of an inch. Lots of woman find cancers by feel that are smaller than that. Despite the fact that my last cancer was jumping up and down and trying to get my attention, I still know what a smaller, shyer one would feel like.
So, after an exhaustive study, I have concluded that there is nothing in there.
Besides, no cancer can live in my body now, I've been poisoned, and all hormones removed.
My official diagnosis is a cyst that got caught up the wrong way in their infernal paddles and gave an asymmetrical appearance on the imaging studies.
B-9.
In the future, I won't be calling my doctor and asking for a "routine" mammogram. The days of my breasts combined with the word routine are over. I will go straight to the diagnostics. If I have to say I feel a lump, it won't be a total lie. There are always going to be cysts in there. Lesson learned.
All I need now is to be told officially that my breast is empty.
Ah, the roller coaster that is life with cancer.
Now I better go focus on something else.
Wednesday, July 7, 2010
Zometa and Herceptin
If I had twin girls, I would have named them Zometa and Herceptin. They would have been lovely little girls who played the violin, but who only loved each other. Herceptin, Hessie for short, would be the easy-going one, cheerful and happy, while Zometa (no nickname) would have the tendency to be loud and throw tantrums. They would have remained spinsters for life, eventually becoming hoarders who - unlike their mother - would not be freaked out by spider webs.
I went to visit the twins today - I mean, I got my Herceptin and Zometa infusion. I like all my infusion nurses, but I decided that I need to ask for Joe from now on. Not only is he funny, but he is the only one able to access my veins without causing me to look like little Zometa beat me up.
I may not look like I've been beat up, but I think the girl got me to a bit. I have a headache now, and I feel a bit woozy and nauseated. The main side effect of this medication is bone pain (to which this regular tamoxifen user says: what else is new?) and a sometimes a fever and flu symptoms.
During the infusion, there was a very strong chemical smell. I kept looking around the room to see if anybody else was wrinkling their nose and sniffing for spilled drugs, but no, it was just me. I was experiencing a phantom smell. I also had that old familiar metal taste like when I got chemo - ah memories. I missed it so.
I told Joe about my bad mammogram, and that I would be having a diagnostic mammogram/sonogram next week. You might think I was bringing it up for sympathy (always welcome), but in reality, I wanted to know at what point, if it's a new cancer, I would need to tell my oncologist. Last time I saw surgeons first. But, if it is a new primary cancer, that would mean my chemo may not be effective so he might want to be clued in early. Joe seemed to think he should be involved immediately, even before any biopsy was done, which surprised me. I now have an appointment to see him for next week.
Next week, my nephews are visiting. I went from only having a MUGA during their visit, to now having a MUGA, a sonogram, a diagnostic mammogram, and an oncology appointment. All on different days.
What a great Auntie I am! I am going to show those boys a good time!
After all this - I'm going to be pretty embarrassed if the tests come back negative.
And, I hope I'm mightily embarrassed.
Little Zometa is acting up, I better go lie down.
I went to visit the twins today - I mean, I got my Herceptin and Zometa infusion. I like all my infusion nurses, but I decided that I need to ask for Joe from now on. Not only is he funny, but he is the only one able to access my veins without causing me to look like little Zometa beat me up.
I may not look like I've been beat up, but I think the girl got me to a bit. I have a headache now, and I feel a bit woozy and nauseated. The main side effect of this medication is bone pain (to which this regular tamoxifen user says: what else is new?) and a sometimes a fever and flu symptoms.
During the infusion, there was a very strong chemical smell. I kept looking around the room to see if anybody else was wrinkling their nose and sniffing for spilled drugs, but no, it was just me. I was experiencing a phantom smell. I also had that old familiar metal taste like when I got chemo - ah memories. I missed it so.
I told Joe about my bad mammogram, and that I would be having a diagnostic mammogram/sonogram next week. You might think I was bringing it up for sympathy (always welcome), but in reality, I wanted to know at what point, if it's a new cancer, I would need to tell my oncologist. Last time I saw surgeons first. But, if it is a new primary cancer, that would mean my chemo may not be effective so he might want to be clued in early. Joe seemed to think he should be involved immediately, even before any biopsy was done, which surprised me. I now have an appointment to see him for next week.
Next week, my nephews are visiting. I went from only having a MUGA during their visit, to now having a MUGA, a sonogram, a diagnostic mammogram, and an oncology appointment. All on different days.
What a great Auntie I am! I am going to show those boys a good time!
After all this - I'm going to be pretty embarrassed if the tests come back negative.
And, I hope I'm mightily embarrassed.
Little Zometa is acting up, I better go lie down.
Asymmetry is a Hard Word to Spell
Ever impatient, this morning I decided to call my PCP to see if there were any clues as to why I need to have more imaging studies done.
By now, I know how this works. The radiologists do the imaging and notify my Primary Care Physician of any further testing that needs to be done and why.
Have you ever read the letters your specialist writes to your PCP? It's all so formal and polite, and usually ends with "Thank you for allowing me to treat your patient," or something gracious like that.
I know because each time a doctor leaves the room, I grab my file and read. We could all take letter-writing courses from specialist doctors.
My PCP did, indeed, have a letter about why I needed to be re-imaged. Speaking of gracious, the office person grabbed my chart and, upon request, read it to me.
"There is a 1.6 cm focus of asymmetry in the upper left quadrant..."
For the life of me, I can't feel anything asymmetrical or otherwise in my breast.
Before I called this morning, I had decided that what they were seeing was a needle track from when I'd had my cysts drained.
However, the 1.6 cm area rules that out, I think.
The word assymetry also rules out a cyst, as they are a lovely oval shape. I know them well.
The word asymmetry is not good when talking about things inside your breast. Now, it doesn't have to be bad either - there are certainly benign reasons for asymmetrical breast tissue.
With my history though, it's hard to dismiss that word.
I have Herceptin and Zometa today so that will keep me occupied.
By now, I know how this works. The radiologists do the imaging and notify my Primary Care Physician of any further testing that needs to be done and why.
Have you ever read the letters your specialist writes to your PCP? It's all so formal and polite, and usually ends with "Thank you for allowing me to treat your patient," or something gracious like that.
I know because each time a doctor leaves the room, I grab my file and read. We could all take letter-writing courses from specialist doctors.
My PCP did, indeed, have a letter about why I needed to be re-imaged. Speaking of gracious, the office person grabbed my chart and, upon request, read it to me.
"There is a 1.6 cm focus of asymmetry in the upper left quadrant..."
For the life of me, I can't feel anything asymmetrical or otherwise in my breast.
Before I called this morning, I had decided that what they were seeing was a needle track from when I'd had my cysts drained.
However, the 1.6 cm area rules that out, I think.
The word assymetry also rules out a cyst, as they are a lovely oval shape. I know them well.
The word asymmetry is not good when talking about things inside your breast. Now, it doesn't have to be bad either - there are certainly benign reasons for asymmetrical breast tissue.
With my history though, it's hard to dismiss that word.
I have Herceptin and Zometa today so that will keep me occupied.
Tuesday, July 6, 2010
Odds are it's B-9
That is what we say to newbies on the cancer boards. Women do searches about breast lumps, find the cancer communities, and post their story about finding a lump or having a mammogram that needs additional imaging. Their mind jumps straight to cancer, and we - who had cancer - reassure them. "The odds are with you. Even if you have a biopsy, 80% of them are benign."
And, it's true - most of them we never see again once their additional tests are done.
And, that is what I'm telling myself now.
Apparently, the mammogram I had last week requires a closer look. So, Tuesday, the 13th, I will have another diagnostic mammogram and an ultrasound.
"It's probably nothing. You'll be fine. Don't worry until you know for sure. Try to relax, you'll be okay."
Easy to say, not quite as easy to do.
And, it's true - most of them we never see again once their additional tests are done.
And, that is what I'm telling myself now.
Apparently, the mammogram I had last week requires a closer look. So, Tuesday, the 13th, I will have another diagnostic mammogram and an ultrasound.
"It's probably nothing. You'll be fine. Don't worry until you know for sure. Try to relax, you'll be okay."
Easy to say, not quite as easy to do.
Monday, July 5, 2010
Sunday, July 4, 2010
Post-Chemo Hair Watch
First, let me wish anybody who finds the blog today a very happy 4th of July. Independence Day is my favorite holiday. I love the US, and am continually amazed at the brilliance of our constitution and our forefathers.
Even more, I love hotdogs, watermelon and blowing stuff up.
In honor of my freedom from baldness, here is my progress from the end of chemo until now.
March 14th, 2010. (My last chemo was March 31st.)
March 24th.
May 2nd, a month after chemo.
Today, the 4th of July. Three months post chemo.
I'm actually starting to dig the color. (We gray haired-types say stuff like "dig." We love those groovy slang words, unlike you young whippersnappers.)
All is not perfect in hair land however, despite my unexpected acceptance of being gray. It is starting to curl around the edges, kind of like bozo the clown. And, it's fuzzing up everywhere, probably because it's getting thick underneath. I'm using hair glue to keep it in place on top and on the sides.
When I say glue, I do mean it.
But, no glue in the world controls the curl. When I say curl, I mean the kind of curl that needs a relaxer, not the kind of curl that you could blow dry or flatiron straight. Very tight, very strong, very kinked curls that feel more like steel wool than hair. My stylist says when it's long enough she'll relax it, but we aren't there yet.
What say you? Should I keep it gray or dye it?
For reference, here was the color before:
Oh wait, that's my cat. Well, it was close.
I don't have many pictures of me pre-cancer, and I don't have editing software to cut out all the excess stuff you don't need to see. But, I think you can see the color.
Gray? Auburn?
Even more, I love hotdogs, watermelon and blowing stuff up.
In honor of my freedom from baldness, here is my progress from the end of chemo until now.
March 14th, 2010. (My last chemo was March 31st.)
March 24th.
May 2nd, a month after chemo.
Today, the 4th of July. Three months post chemo.
I'm actually starting to dig the color. (We gray haired-types say stuff like "dig." We love those groovy slang words, unlike you young whippersnappers.)
All is not perfect in hair land however, despite my unexpected acceptance of being gray. It is starting to curl around the edges, kind of like bozo the clown. And, it's fuzzing up everywhere, probably because it's getting thick underneath. I'm using hair glue to keep it in place on top and on the sides.
When I say glue, I do mean it.
But, no glue in the world controls the curl. When I say curl, I mean the kind of curl that needs a relaxer, not the kind of curl that you could blow dry or flatiron straight. Very tight, very strong, very kinked curls that feel more like steel wool than hair. My stylist says when it's long enough she'll relax it, but we aren't there yet.
What say you? Should I keep it gray or dye it?
For reference, here was the color before:
Oh wait, that's my cat. Well, it was close.
I don't have many pictures of me pre-cancer, and I don't have editing software to cut out all the excess stuff you don't need to see. But, I think you can see the color.
Gray? Auburn?
Saturday, July 3, 2010
Newsflash! I mean, duh.....
The big breast cancer news this week comes from the recent ASCO (American Society of Clinical Oncology) conference.
If, like me, you have been scouring the abstracts from this conference to see if any of it is relevant to you, than by now you may be aware that more than half of all women prescribed Tamoxifen (or aromatase inhibitors such as Arimedex and Femera) discontinue therapy on their own.
My question is: only half?
Considering the extremely harsh side effects of the drug, I'm shocked that almost 50% finish it. I have only been taking it for 3 months, and I think, according to the pills left in my bottle, I've skipped about ten days worth.
When something makes you feel that bad, and you realize at 1:00 p.m. that, oops, you've forgotten to take your morning pill, it's really easy to say, "Oh well, I'll remember tomorrow" rather than go run back and take it immediately. Each morning it's an act of strength and courage to put a pill in your mouth that is going to cause you bone and joint pain, serious discomfort, hot flashes, and prevent you from sleeping.
It wasn't until I was prescribed percocet that my compliance went up. I creakily get up in the morning, after a terrible night's sleep, gently sit on a pad so my hips don't hurt, sip some coffee and take my tamoxifen with two percocet. Then, and only then, I can begin to function. But it isn't full-fledged functioning. I still have a backache and a general bone ache, and I can't stand for long, wear heels or do anything energetic. But the medicine takes the edge off so I can move.
Here is a quote from the doctors.
"We were surprised to see that so many young women stopped treatment early, despite the fact that the therapy has a proven track record of reducing breast cancer recurrence,” said Dawn Hershman, MD, associate professor of medicine and epidemiology at Columbia University Medical Center, who led the study. “Perhaps we need to do a better job of making patients aware that to get the full benefit of treatment, they need to take their medications on time and for the full duration.”
Perhaps, rather than thinking your patients don't understand the importance of their medication, (and before you hire somebody to put out a cartoon booklet explaining it to us), your time might be better spent understanding how debilitating these side effects can be, and figure out a way for us to continue on without suffering.
Clearly, for a doctor in her position to be surprised at non-compliance tells a story. But, the story isn't that we patients don't understand the risks - it's that we either are not explaining to our doctors what this drug does to our lives - or they aren't listening.
I went through surgery and chemo without expecting terrible side effects and for the most part, I was right. And, the ones I had - well, I knew there was a reasonable end-date on them.
When I was prescribed tamoxifen, I didn't even bother to research the side effects at all. Medications don't seem to affect me much, and I had no thoughts that it would be any different with tamoxifen. I had no expectations of having any problems.
I got quite a shock when I discovered how wrong I was. And, more of a shock when I found out I wasn't alone, that many, many women experience side effects so harsh that they are willing to take their chances with cancer.
Having to take this drug for five years seems unmanageable to me. I fully intended to go full-bore with this cancer and do everything possible to prevent a recurrence.
But, at what cost to my quality of life?
This is something I will have to continually re-evaluate.
.
If, like me, you have been scouring the abstracts from this conference to see if any of it is relevant to you, than by now you may be aware that more than half of all women prescribed Tamoxifen (or aromatase inhibitors such as Arimedex and Femera) discontinue therapy on their own.
My question is: only half?
Considering the extremely harsh side effects of the drug, I'm shocked that almost 50% finish it. I have only been taking it for 3 months, and I think, according to the pills left in my bottle, I've skipped about ten days worth.
When something makes you feel that bad, and you realize at 1:00 p.m. that, oops, you've forgotten to take your morning pill, it's really easy to say, "Oh well, I'll remember tomorrow" rather than go run back and take it immediately. Each morning it's an act of strength and courage to put a pill in your mouth that is going to cause you bone and joint pain, serious discomfort, hot flashes, and prevent you from sleeping.
It wasn't until I was prescribed percocet that my compliance went up. I creakily get up in the morning, after a terrible night's sleep, gently sit on a pad so my hips don't hurt, sip some coffee and take my tamoxifen with two percocet. Then, and only then, I can begin to function. But it isn't full-fledged functioning. I still have a backache and a general bone ache, and I can't stand for long, wear heels or do anything energetic. But the medicine takes the edge off so I can move.
Here is a quote from the doctors.
"We were surprised to see that so many young women stopped treatment early, despite the fact that the therapy has a proven track record of reducing breast cancer recurrence,” said Dawn Hershman, MD, associate professor of medicine and epidemiology at Columbia University Medical Center, who led the study. “Perhaps we need to do a better job of making patients aware that to get the full benefit of treatment, they need to take their medications on time and for the full duration.”
Perhaps, rather than thinking your patients don't understand the importance of their medication, (and before you hire somebody to put out a cartoon booklet explaining it to us), your time might be better spent understanding how debilitating these side effects can be, and figure out a way for us to continue on without suffering.
Clearly, for a doctor in her position to be surprised at non-compliance tells a story. But, the story isn't that we patients don't understand the risks - it's that we either are not explaining to our doctors what this drug does to our lives - or they aren't listening.
I went through surgery and chemo without expecting terrible side effects and for the most part, I was right. And, the ones I had - well, I knew there was a reasonable end-date on them.
When I was prescribed tamoxifen, I didn't even bother to research the side effects at all. Medications don't seem to affect me much, and I had no thoughts that it would be any different with tamoxifen. I had no expectations of having any problems.
I got quite a shock when I discovered how wrong I was. And, more of a shock when I found out I wasn't alone, that many, many women experience side effects so harsh that they are willing to take their chances with cancer.
Having to take this drug for five years seems unmanageable to me. I fully intended to go full-bore with this cancer and do everything possible to prevent a recurrence.
But, at what cost to my quality of life?
This is something I will have to continually re-evaluate.
.
