What a Woman Wednesday, Oct. 26
One of the defining moments of my adulthood is the death of my mother. I was 30 years old, and I had spent the most of my 20s watching my mom fight breast cancer. It’s almost impossible for me to remember a time when my mother wasn’t fighting.
I have always taken the health of my breasts very seriously. I was getting yearly mammograms at 25 years old. At that time, not much was known about the heredity of the disease. Not that it would have mattered much to me. My mother was adopted. My health history went back to her. That’s not much to go on. But when I was about 35, several things happened. I became a single mother by choice of a beautiful little girl, and testing began for the BRCA gene. I spoke to my OBGyn at a yearly visit, but she did not think testing was necessary. The odds of my having the gene was slim to none. So, I went on with my life. I had another baby girl, and testing became more common.
First, let me say…I am a firm believer in testing. Information is power. But do you know what you want to do with the information? That’s an important question to answer. So, if I got tested, what would I do with the information? What if I was BRCA positive? Several factors made my decision easier. First, I had 2 children. Living a long life was very important. Second, my breasts had already nursed 2 children…their job was basically done. Finally, without a spouse, I didn’t really need to worry about the psychological effects of a mastectomy on anyone except me. So, the hard decision was made. If I was BRCA positive, bye-bye breasts. I was oddly matter-of-fact as I marched to UCLA to give them my blood.
Even the genetic counselor told me the odds were in my favor. Very few people carry the gene mutation. I nodded, then held out my arm. It was the first week of October, 2009. Results seemed to take forever (don’t they always when you’re waiting?) but sooner than I expected, I got a phone call from UCLA. Her first comment to me was “Wow, you called it.” That was all I needed to hear. I knew what the result was. So…where do I go from here?
My decision was simple (for me, anyway). I spoke to the UCLA Breast Center and got referrals to oncologists and plastic surgeons. For my family, the decision wasn’t so cut-and-dry. Both my parents are gone, and my family (aside from my children) was a tight group of cousins, aunts, and uncle….and one brother. I did not have to worry about the effects of my surgery on a spouse, but I was surprised at the effects of my surgery on my brother. My cousins, aunts, and uncles were very supportive. They asked lots of questions, but never doubted or questioned what I was doing. My brother….that’s another story. He immediately jumped to “don’t do anything drastic without talking to a doctor.” Really? Did he think these test results fell out of the sky? Who did he think I’ve been talking to? He sent me emails of articles that implied there was no reason to have surgery, and that simple vigilance was all that was needed. WHAT?!!!!! Oy…..his reaction was not what I expected. He was so disapproving of what I planned that he stopped talking to me. When my cousin called the day before my surgery to make sure he knew I was going to the hospital, he acknowledged knowing but not approving, so he had no desire to hear anything. At the time I am writing this, it has been almost 2 years since we have spoken. He does not respond to birthday wishes, and holiday cards have no personal greeting on them. I think his wife sends them. So, while I am disturbed by his reaction, it does not stop me. I must make choices that are best for me and my children.
So….jump to July 2010. After consultations and pictures and more consultations, I woke up early and took one last look at my breasts. I tried to imagine what they would look like after the surgery, but couldn’t picture it. I was nervous about general anesthetic (who isn’t?) but I had faith in the doctors I had chosen. I wish I had something exciting to write at this point, but sorry…I’ve got nothing. I had a lovely IV relaxant (once that started, really I could care less about the surgery….delightful), was taken into surgery, and woke up about 10 hours later with new breasts. Really….that’s it. In one surgery, one doctor took my breasts off, and another removed a portion of my stomach and recreated new breasts. Isn’t modern science amazing?! New perkier breasts and a tummy tuck. The pain was not what I expected…not better or worse, just different. Each hospital has it’s own protocol. A friend had the same surgery at UCSF and her experience was only slightly different than mine. The nurses were amazing, understanding, and helpful. Getting out of bed was excruciating, but necessary. After 5 days, I was discharged. I was told that by day 7 or 8 after surgery, I’d feel almost 100% better (better being a relative term). I arranged to spend the first few days at my cousins home (where my children had been staying). And this is when things did NOT go as planned.
That night, my right breast just started swelling and feeling tight. There’s not other way to explain the feeling. I didn’t notice a change in the color of the tissue (something I was told to look for). The doctor said some swelling was normal, and as long as the color didn’t change, I should relax and call in the morning (really…it’s not a cliché…he really said that). In the morning, I had a small breakfast (in hindsight, not my best decision), and started to get dressed. I noticed that the center of my breast was a bit more purple than the rest of the breast. We called the doctor and decided to head to the hospital. Now, let me say now that I tend to overreact when it comes to my health. I worry about everything. My cousin is just the opposite, which is good for me. I felt bad that she had to drive me to the hospital, and she was calm and confident that things were fine, but knew I needed to be reassured. Neither of us expected what came next.
At the ER, my plastic surgeon’s resident came in (a very nice young man) and pulled out the little machine that listens to the blood flow in the new breast tissue….it was a lot quieter than I remembered from my hospital stay. Wait…quieter isn’t the right word…it was silent. So silent, as a matter of fact, that he immediately called the doctor (did I mention it was a Sunday and 4th of July?) who dropped everything and came in. I was able to make a quick phone call to my children to explain that I wasn’t coming home right away, then I was whisked away. Have you ever seen those medical dramas where the camera has the point-of-view of the patient and you see the ceiling tiles flying by? That’s exactly how it was. I was awake for a lot more than I was the first time…way more aware of what was happening and the urgency that was absent the first time. It took 4 different anesthesiologists to get the IV in me…I don’t say arm, because honestly, they would have put it anywhere they could find at that point. Apparently, I have bad veins. I guess they finally got it, though, because I don’t remember anything after that. But remember that small breakfast I mentioned earlier? It’s about to come back to haunt me.
When I woke up, all I remember is not being able to swallow comfortably, which did cause a feeling of panic. Something was in my throat. Apparently, when you aspirate during surgery, they must reinsert the breathing tube and cannot take it out until you are fully awake. I will sum it up this way….waking up with a breathing tube sucks. I wanted it out, but was scared of what it would feel like to take it out. It seemed like I was in recovery forever. I remember I kept hitting the call button hoping for help, and the nurses were wonderful, but obviously I was not their only patient, and I had no concept of time anyway. But eventually, the tube came out. I don’t remember much so it was probably not as bad as I was worried about. I just remember that night…..the pain was localized in my right breast, shoulder, and arm. It hurt to move my arm at all. It wasn’t until the next morning that I learned they could not save the breast. Okay…was there any upside to this? Well, after a few days (which would have been day 7 or 8 after my original surgery….does that ring a bell?) I did notice that every other surgical area felt a lot better. Getting up by myself, using the bathroom, etc, was easier. I was able to take short, slow walks around the hospital. I could well imagine that if not for the hiccup of my blood clotted breast, I’d be very happy right now.
Okay…so fast forward a bit…..the surgery did not come off exactly as anyone had planned. Instead of two new perky breasts, I was Rikki, the one-boobed-wonder. Not the outcome I was hoping for. However, if I learned anything from my parents, it was to have a sense of humor. So, laughter and self-deprecation of my situation did wonders. I pulled myself up, dusted what was left of me off, and made a new plan. I was not that keen to have implants, which was why I chose to have the FLAP surgery, but since they could not determine why the breast clotted, I did not want to risk another surgery, so I started the process of a breast implant on the right side. It was a bit bizarre, having them pump saline into the expander, but not painful. And the following December, I went back in, had the implant put in, and the second phase of my original surgery. Apparently, the BRCA gene also increases your risk of ovarian and uterine cancer….and I was not willing to risk ovarian cancer. I was already peri-menopausal prior to the surgery, so I was perfectly willing to throw myself into full-fledged menopause if it meant no ovarian cancer. I had two c-sections, so I was not worried about this surgery at all. So, what did I learn? Apparently, surgery on your stomach can make your shoulder hurt. Really…it’s called deferred pain and it was NOT pleasant. Air bubbles in your stomach travel up and get lodged in your shoulder. Pain meds don’t work, but heat was amazing. I practically lived with my heating pad for about a week. But after that, I felt great. My kids were wonderful and helpful (as much as a 9 and 6 year old can be), my family was awesome, my co-workers helped out in any way they could, and my temple family supported me in any way they could….although still no communication with my brother.
I think it’s important to mention that as I looked back to the past 6 months (really? Was that all it was?) it’s important to say one thing. Even knowing what I know…..the pain, blood clot, breathing tube, etc…I’d do it all over again. Let me say that again….I’d do it all over again. Except maybe I wouldn’t have eaten breakfast that morning. But once the breasts were gone, I felt like a giant weight had been lifted off my shoulder…or maybe off my breasts. I was not worried about finding the lump. Yes, there was always a small chance of still getting breast cancer, but really my odds are less than the general population now.
My only worry, as I look at my two daughters, I wonder…..did one of them inherit the bullet? How do you talk to a child about that? At what age do you start to have that discussion? These are questions that I still struggle with. My girls don’t connect my surgery to themselves yet, but I know that day will come. So my journey is not over. I am confident that when the time comes, I will be able to talk to my girls about this part of our family DNA, and I will walk the path with them as they make their own choices. I do not regret the path I chose in any way. I am very happy with my decision.
…and they all lived happily ever after.
One of the defining moments of my adulthood is the death of my mother. I was 30 years old, and I had spent the most of my 20s watching my mom fight breast cancer. It’s almost impossible for me to remember a time when my mother wasn’t fighting.
I have always taken the health of my breasts very seriously. I was getting yearly mammograms at 25 years old. At that time, not much was known about the heredity of the disease. Not that it would have mattered much to me. My mother was adopted. My health history went back to her. That’s not much to go on. But when I was about 35, several things happened. I became a single mother by choice of a beautiful little girl, and testing began for the BRCA gene. I spoke to my OBGyn at a yearly visit, but she did not think testing was necessary. The odds of my having the gene was slim to none. So, I went on with my life. I had another baby girl, and testing became more common.
First, let me say…I am a firm believer in testing. Information is power. But do you know what you want to do with the information? That’s an important question to answer. So, if I got tested, what would I do with the information? What if I was BRCA positive? Several factors made my decision easier. First, I had 2 children. Living a long life was very important. Second, my breasts had already nursed 2 children…their job was basically done. Finally, without a spouse, I didn’t really need to worry about the psychological effects of a mastectomy on anyone except me. So, the hard decision was made. If I was BRCA positive, bye-bye breasts. I was oddly matter-of-fact as I marched to UCLA to give them my blood.
Even the genetic counselor told me the odds were in my favor. Very few people carry the gene mutation. I nodded, then held out my arm. It was the first week of October, 2009. Results seemed to take forever (don’t they always when you’re waiting?) but sooner than I expected, I got a phone call from UCLA. Her first comment to me was “Wow, you called it.” That was all I needed to hear. I knew what the result was. So…where do I go from here?
My decision was simple (for me, anyway). I spoke to the UCLA Breast Center and got referrals to oncologists and plastic surgeons. For my family, the decision wasn’t so cut-and-dry. Both my parents are gone, and my family (aside from my children) was a tight group of cousins, aunts, and uncle….and one brother. I did not have to worry about the effects of my surgery on a spouse, but I was surprised at the effects of my surgery on my brother. My cousins, aunts, and uncles were very supportive. They asked lots of questions, but never doubted or questioned what I was doing. My brother….that’s another story. He immediately jumped to “don’t do anything drastic without talking to a doctor.” Really? Did he think these test results fell out of the sky? Who did he think I’ve been talking to? He sent me emails of articles that implied there was no reason to have surgery, and that simple vigilance was all that was needed. WHAT?!!!!! Oy…..his reaction was not what I expected. He was so disapproving of what I planned that he stopped talking to me. When my cousin called the day before my surgery to make sure he knew I was going to the hospital, he acknowledged knowing but not approving, so he had no desire to hear anything. At the time I am writing this, it has been almost 2 years since we have spoken. He does not respond to birthday wishes, and holiday cards have no personal greeting on them. I think his wife sends them. So, while I am disturbed by his reaction, it does not stop me. I must make choices that are best for me and my children.
So….jump to July 2010. After consultations and pictures and more consultations, I woke up early and took one last look at my breasts. I tried to imagine what they would look like after the surgery, but couldn’t picture it. I was nervous about general anesthetic (who isn’t?) but I had faith in the doctors I had chosen. I wish I had something exciting to write at this point, but sorry…I’ve got nothing. I had a lovely IV relaxant (once that started, really I could care less about the surgery….delightful), was taken into surgery, and woke up about 10 hours later with new breasts. Really….that’s it. In one surgery, one doctor took my breasts off, and another removed a portion of my stomach and recreated new breasts. Isn’t modern science amazing?! New perkier breasts and a tummy tuck. The pain was not what I expected…not better or worse, just different. Each hospital has it’s own protocol. A friend had the same surgery at UCSF and her experience was only slightly different than mine. The nurses were amazing, understanding, and helpful. Getting out of bed was excruciating, but necessary. After 5 days, I was discharged. I was told that by day 7 or 8 after surgery, I’d feel almost 100% better (better being a relative term). I arranged to spend the first few days at my cousins home (where my children had been staying). And this is when things did NOT go as planned.
That night, my right breast just started swelling and feeling tight. There’s not other way to explain the feeling. I didn’t notice a change in the color of the tissue (something I was told to look for). The doctor said some swelling was normal, and as long as the color didn’t change, I should relax and call in the morning (really…it’s not a cliché…he really said that). In the morning, I had a small breakfast (in hindsight, not my best decision), and started to get dressed. I noticed that the center of my breast was a bit more purple than the rest of the breast. We called the doctor and decided to head to the hospital. Now, let me say now that I tend to overreact when it comes to my health. I worry about everything. My cousin is just the opposite, which is good for me. I felt bad that she had to drive me to the hospital, and she was calm and confident that things were fine, but knew I needed to be reassured. Neither of us expected what came next.
At the ER, my plastic surgeon’s resident came in (a very nice young man) and pulled out the little machine that listens to the blood flow in the new breast tissue….it was a lot quieter than I remembered from my hospital stay. Wait…quieter isn’t the right word…it was silent. So silent, as a matter of fact, that he immediately called the doctor (did I mention it was a Sunday and 4th of July?) who dropped everything and came in. I was able to make a quick phone call to my children to explain that I wasn’t coming home right away, then I was whisked away. Have you ever seen those medical dramas where the camera has the point-of-view of the patient and you see the ceiling tiles flying by? That’s exactly how it was. I was awake for a lot more than I was the first time…way more aware of what was happening and the urgency that was absent the first time. It took 4 different anesthesiologists to get the IV in me…I don’t say arm, because honestly, they would have put it anywhere they could find at that point. Apparently, I have bad veins. I guess they finally got it, though, because I don’t remember anything after that. But remember that small breakfast I mentioned earlier? It’s about to come back to haunt me.
When I woke up, all I remember is not being able to swallow comfortably, which did cause a feeling of panic. Something was in my throat. Apparently, when you aspirate during surgery, they must reinsert the breathing tube and cannot take it out until you are fully awake. I will sum it up this way….waking up with a breathing tube sucks. I wanted it out, but was scared of what it would feel like to take it out. It seemed like I was in recovery forever. I remember I kept hitting the call button hoping for help, and the nurses were wonderful, but obviously I was not their only patient, and I had no concept of time anyway. But eventually, the tube came out. I don’t remember much so it was probably not as bad as I was worried about. I just remember that night…..the pain was localized in my right breast, shoulder, and arm. It hurt to move my arm at all. It wasn’t until the next morning that I learned they could not save the breast. Okay…was there any upside to this? Well, after a few days (which would have been day 7 or 8 after my original surgery….does that ring a bell?) I did notice that every other surgical area felt a lot better. Getting up by myself, using the bathroom, etc, was easier. I was able to take short, slow walks around the hospital. I could well imagine that if not for the hiccup of my blood clotted breast, I’d be very happy right now.
Okay…so fast forward a bit…..the surgery did not come off exactly as anyone had planned. Instead of two new perky breasts, I was Rikki, the one-boobed-wonder. Not the outcome I was hoping for. However, if I learned anything from my parents, it was to have a sense of humor. So, laughter and self-deprecation of my situation did wonders. I pulled myself up, dusted what was left of me off, and made a new plan. I was not that keen to have implants, which was why I chose to have the FLAP surgery, but since they could not determine why the breast clotted, I did not want to risk another surgery, so I started the process of a breast implant on the right side. It was a bit bizarre, having them pump saline into the expander, but not painful. And the following December, I went back in, had the implant put in, and the second phase of my original surgery. Apparently, the BRCA gene also increases your risk of ovarian and uterine cancer….and I was not willing to risk ovarian cancer. I was already peri-menopausal prior to the surgery, so I was perfectly willing to throw myself into full-fledged menopause if it meant no ovarian cancer. I had two c-sections, so I was not worried about this surgery at all. So, what did I learn? Apparently, surgery on your stomach can make your shoulder hurt. Really…it’s called deferred pain and it was NOT pleasant. Air bubbles in your stomach travel up and get lodged in your shoulder. Pain meds don’t work, but heat was amazing. I practically lived with my heating pad for about a week. But after that, I felt great. My kids were wonderful and helpful (as much as a 9 and 6 year old can be), my family was awesome, my co-workers helped out in any way they could, and my temple family supported me in any way they could….although still no communication with my brother.
I think it’s important to mention that as I looked back to the past 6 months (really? Was that all it was?) it’s important to say one thing. Even knowing what I know…..the pain, blood clot, breathing tube, etc…I’d do it all over again. Let me say that again….I’d do it all over again. Except maybe I wouldn’t have eaten breakfast that morning. But once the breasts were gone, I felt like a giant weight had been lifted off my shoulder…or maybe off my breasts. I was not worried about finding the lump. Yes, there was always a small chance of still getting breast cancer, but really my odds are less than the general population now.
My only worry, as I look at my two daughters, I wonder…..did one of them inherit the bullet? How do you talk to a child about that? At what age do you start to have that discussion? These are questions that I still struggle with. My girls don’t connect my surgery to themselves yet, but I know that day will come. So my journey is not over. I am confident that when the time comes, I will be able to talk to my girls about this part of our family DNA, and I will walk the path with them as they make their own choices. I do not regret the path I chose in any way. I am very happy with my decision.
…and they all lived happily ever after.
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