Yesterday I talked about how cancer stole my breasts and a good portion of my self esteem. Cancer has a way of doing that - even to the strongest of people. It steals away parts and pieces of you, sometimes a little at a time, and some days, it takes big chunks. Some days it is this big pink elephant sitting in your living room, other days its just a word.
When you first get diagnosed, your life becomes a whirlwind. You are in and out of doctors' offices, running tests, making plans, getting concerned phone calls from family and friends. It becomes the center of your universe, and it can feel like it becomes the center of everyone else's universe. But throughout the hustle and bustle, there is a relief in that you are making progress, you are making plans, you are fighting the cancer. Its a fight and you fight it head on.
However, after the surgeries, after the treatment, life quiets down. For those around you, life goes back to normal. Cancer is something that was dealt with, something that is over. Unfortunately, for the one that had the cancer, there is no going back to normal.
The last few months have been extremely hard. Yes I am blessed to be pregnant and that the cancer stuff has been pushed to the side. I am blessed that I did not have to go through chemotherapy and get poisoned every two weeks for months. In fact, I am sure to all those close to me, life appears to be back to "normal." We aren't going to cancer appointments every week, there are no scheduled cancer surgeries in the near future. Yes I will be starting tamoxifen next week, but it wont make me lose my hair, I wont be vomiting from the poison (hopefully not) - to the outside world I will be "normal" and I will look "normal." I will be a 30 year old that just had her second baby. If all the tests they run after the baby is born shows that the cancer is out of my body, most people will forget that I had cancer. Sadly, I wont forget.
That's how cancer steals away parts and pieces of you, it feeds on your worry. In the medical world, you aren't "cured" of cancer until you go 5 years without a recurrence. But to the regular world, you are "cured" as soon as the cancer is out of your body. While we hope and pray that the cancer is out of my body now, this doesn't mean that I am "cured;" it means I am in remission. And I guess until a doctor can tell me I am CURED, I will worry.
The most common sites of breast cancer metastasis are the brain, the bones, the liver and the lungs. All my doctors have told me this and this haunts me. I have become what doctors call a "zebra hunter." When you hear hooves galloping in the distance, you are supposed to think of horses running, you are not supposed to think of zebras running. Similarly, when I get a headache, I am supposed to think that its just a normal headache; unfortunately I think that it is cancer that has spread to my brain. When I start to have pain in weird areas of my body, I think its the cancer that has spread to my bones. This is why I HATE cancer, it has stolen my comfort and my peace of mind.
BUT cancer is not all evil. Cancer has changed my life for the better in a lot ways. I do not take anything, anyone, or any day for granted. I notice the small things in life a lot more. I cherish every second with Gabrielle, even when it is 4:30 A.M. on Easter morning and I want to sleep and she wants to see what the Easter Bunny brought her. I cherish life. I am glad to be alive. I am glad for every day. Cancer may have stolen some things, but it wont get all of me. It wont get the best of me.
Tuesday, April 22, 2014
Monday, April 21, 2014
December 30, 2013 - Reconstruction
As I have mentioned, tissue expanders are terrible. I could not wait until I could get them out and get implants. However, since I was pregnant, it was questionable as to whether I could do the swap while pregnant or if I was going to have to wait until after the pregnancy. I was really hoping that my doctors would allow me to do the swap but I also did not want to risk the pregnancy and harm the baby.
The swap would entail an out patient surgery but would require full anesthesia. My plastic surgeon said that he was comfortable with doing the swap during the second trimester as long as my OB agreed to it. I spoke to my OB and he was fine with it but wanted me to wait until later in my second trimester. SO wait I did.
My surgery was scheduled for December 30, 2013. I naively thought it was going to be a piece of cake surgery; so much so that I told Kevin that I thought I would be up for a New Year's Eve party. I was WRONG.
The day of surgery
I could not eat anything after midnight the night before the surgery, this is a hard thing to do for a pregnant person! By the time we got to the hospital at 6:00 am, I was starving and morning sickness was showing its ugly side. I kept throwing up but there was nothing I could do, I had to tough it out. I could not be in the regular surgery wing, I had to be in the maternity wing for the surgery so that the baby could be monitored before, during and after. The nurses looked so confused. They were used to seeing C-sections, pregnancy related surgeries, etc - not swap surgeries. I really threw them for a loop.
The plastic surgeon came in to mark me up before surgery. The plan was to cut along the same incision lines as the mastectomy, take out the expanders and put in the implants. While I was under, he was also going to work on smoothing out all of the uneven parts left from the mastectomy. While he was marking me up, I reminded him that my goal was to be my original size (D-cup) but perky. I kept stressing perky - I wanted them to look like they did before I had Gabrielle. He said that he would do what he could but the perkier he tried to make them, the more pain I would be in post surgery due to all the internal stitching that would be needed. Again, I wasn't worried about this surgery, I figured if I had lived through the mastectomy, this would be a walk in the park. I told him to do what he needed to do to make them perky - I would live to regret that statement.
The plan was to use 600 cc implants, which in a regular augmentation would be a D cup. The plastic surgeon said that he would try different implants on me while I was under to figure out the best shape, curvature, etc.
Right as they were about to insert the IV into my left arm, Kevin started screaming and said "you cant do that, that is the side where they did the sentinel node biopsy." It had not crossed my mind. I was thankful Kevin was on his toes. This really got the nurse into a tizzy and she called for back up and second opinions from the surgeons. It was obvious, she was not familiar with this kind of surgery, or a pregnant person having a "cancer surgery." This was foreign to her and to the others that came in the room.
The IV finally went in the right arm, unfortunately this was the same arm that they had to monitor my blood pressure from, so every time the band would squeeze my arm to take my pressure, the blood would reverse flow into the IV. It was bad. It was painful. I was ready for the good drugs so that I could just be knocked out and not know what was going on. I finally got those once I was in the surgery room and on the table.
I was really hopeful going into surgery that I would come out looking "normal." That my breasts were going to finally look like my pre-surgery breasts. I was too hopeful. I was too optimistic.
When I woke up from surgery, I felt groggy and sore. But this was nothing to the pain that would hit me later. I can honestly say that the pain I felt the days following the swap was worse than the pain following the mastectomy. To this day I am not sure exactly why it turned out that way -maybe because I could not take as strong of medicine due to the pregnancy, maybe due to the amount of internal sutures that were done to try to get me "perky", or maybe because I was just not mentally prepared for the pain that would come with this surgery. Nevertheless, I was in pain for days. I cried for days. I kept ice packs on my for days. There was no relief.
To add insult to injury (no pun intended), when I took the bandages off 48 hours later, I was so disappointed. These did not look like real breasts, or good fake breasts. I cried even more. I longed for normalcy. I just wanted my old 29 year old, cancer free, breasts back. Yes they might not have been as perky since I breastfed Gabrielle, but at that moment, I would have done anything to have them back. I would have never complained about them again. I would have never daydreamed about getting a boob job again. But this couldn't happen. I was stuck with these reconstructed breasts that were way less than satisfactory to me.
When I went for follow up the next week with the plastic surgeon, I cried. He explained to me again that I could not expect them to look like regular augmented breasts. He reminded me that with reconstruction, there was nothing there to start with - it was starting from scratch. With a regular boob job, you have breast tissue to start with. I cried more. I still have days when I look into the mirror and cry. I have to remind myself that however bad they may look to me - they are cancer free. My breasts are no longer killing me. But to tell you that its easy to look in the mirror, would be a lie. To tell you that I am not dreading going to the pool and beach this summer, would be a lie. To tell you that when Kevin sees me without a shirt on that I don't want to breakdown and cry, would be a lie.
Cancer stole my breasts from me along with a lot of my self esteem. It won that battle. I plan on winning the war though.
The swap would entail an out patient surgery but would require full anesthesia. My plastic surgeon said that he was comfortable with doing the swap during the second trimester as long as my OB agreed to it. I spoke to my OB and he was fine with it but wanted me to wait until later in my second trimester. SO wait I did.
My surgery was scheduled for December 30, 2013. I naively thought it was going to be a piece of cake surgery; so much so that I told Kevin that I thought I would be up for a New Year's Eve party. I was WRONG.
The day of surgery
I could not eat anything after midnight the night before the surgery, this is a hard thing to do for a pregnant person! By the time we got to the hospital at 6:00 am, I was starving and morning sickness was showing its ugly side. I kept throwing up but there was nothing I could do, I had to tough it out. I could not be in the regular surgery wing, I had to be in the maternity wing for the surgery so that the baby could be monitored before, during and after. The nurses looked so confused. They were used to seeing C-sections, pregnancy related surgeries, etc - not swap surgeries. I really threw them for a loop.
The plastic surgeon came in to mark me up before surgery. The plan was to cut along the same incision lines as the mastectomy, take out the expanders and put in the implants. While I was under, he was also going to work on smoothing out all of the uneven parts left from the mastectomy. While he was marking me up, I reminded him that my goal was to be my original size (D-cup) but perky. I kept stressing perky - I wanted them to look like they did before I had Gabrielle. He said that he would do what he could but the perkier he tried to make them, the more pain I would be in post surgery due to all the internal stitching that would be needed. Again, I wasn't worried about this surgery, I figured if I had lived through the mastectomy, this would be a walk in the park. I told him to do what he needed to do to make them perky - I would live to regret that statement.
The plan was to use 600 cc implants, which in a regular augmentation would be a D cup. The plastic surgeon said that he would try different implants on me while I was under to figure out the best shape, curvature, etc.
Right as they were about to insert the IV into my left arm, Kevin started screaming and said "you cant do that, that is the side where they did the sentinel node biopsy." It had not crossed my mind. I was thankful Kevin was on his toes. This really got the nurse into a tizzy and she called for back up and second opinions from the surgeons. It was obvious, she was not familiar with this kind of surgery, or a pregnant person having a "cancer surgery." This was foreign to her and to the others that came in the room.
The IV finally went in the right arm, unfortunately this was the same arm that they had to monitor my blood pressure from, so every time the band would squeeze my arm to take my pressure, the blood would reverse flow into the IV. It was bad. It was painful. I was ready for the good drugs so that I could just be knocked out and not know what was going on. I finally got those once I was in the surgery room and on the table.
I was really hopeful going into surgery that I would come out looking "normal." That my breasts were going to finally look like my pre-surgery breasts. I was too hopeful. I was too optimistic.
When I woke up from surgery, I felt groggy and sore. But this was nothing to the pain that would hit me later. I can honestly say that the pain I felt the days following the swap was worse than the pain following the mastectomy. To this day I am not sure exactly why it turned out that way -maybe because I could not take as strong of medicine due to the pregnancy, maybe due to the amount of internal sutures that were done to try to get me "perky", or maybe because I was just not mentally prepared for the pain that would come with this surgery. Nevertheless, I was in pain for days. I cried for days. I kept ice packs on my for days. There was no relief.
To add insult to injury (no pun intended), when I took the bandages off 48 hours later, I was so disappointed. These did not look like real breasts, or good fake breasts. I cried even more. I longed for normalcy. I just wanted my old 29 year old, cancer free, breasts back. Yes they might not have been as perky since I breastfed Gabrielle, but at that moment, I would have done anything to have them back. I would have never complained about them again. I would have never daydreamed about getting a boob job again. But this couldn't happen. I was stuck with these reconstructed breasts that were way less than satisfactory to me.
When I went for follow up the next week with the plastic surgeon, I cried. He explained to me again that I could not expect them to look like regular augmented breasts. He reminded me that with reconstruction, there was nothing there to start with - it was starting from scratch. With a regular boob job, you have breast tissue to start with. I cried more. I still have days when I look into the mirror and cry. I have to remind myself that however bad they may look to me - they are cancer free. My breasts are no longer killing me. But to tell you that its easy to look in the mirror, would be a lie. To tell you that I am not dreading going to the pool and beach this summer, would be a lie. To tell you that when Kevin sees me without a shirt on that I don't want to breakdown and cry, would be a lie.
Cancer stole my breasts from me along with a lot of my self esteem. It won that battle. I plan on winning the war though.
Tuesday, April 15, 2014
Baby Blues
I knew the months of October through February were going to be months of nausea, sickness, etc. However, I thought this would be from the chemotherapy - not from pregnancy. Nevertheless, the first four months of the pregnancy were rough. Anyone that knows me knows that I am not a real big fan of pregnancy, I was not with Gabrielle and I am not with this one. (And I don't hide it well either). I pretty much hate those people that say "I loved being pregnant. I only gained 15 pounds. I never felt better than when I was pregnant. I glowed." Here's the thing, when I am pregnant, I don't glow, I gain a lot of weight, I throw up multiple times a day and I just basically hate every second of pregnancy. I pretty much start counting down the days and hours until I can deliver at like week 8, which makes for a long 9 months (which is technically ten months).
Gender Reveal
There are a few moments of pregnancy that I enjoy - the top being when we find out the gender. I am not one of those people that can wait until I deliver, I pretty much find a way to find out as soon as scientifically possible, which is around 13 weeks if you are wondering. So in November we made an appointment to find out what we were having. Gabrielle and I wanted a girl; in fact, I was almost positive it was a girl because the pregnancy seemed very similar to my pregnancy with Gabrielle. Gabrielle said she was running away if it was a boy. Of course, Kevin wanted that boy that he always dreamed about having (he said he was running away if it was a girl). So basically either Gabrielle or Kevin was running away once we knew the results.
Luckily the baby was cooperative and showed us the right part right away - Its a BOY! Gabrielle was sitting on Kevin when the tech said it was a boy and she slapped her dad. I was in shock but I was also very happy that Kevin was getting a son. Kevin smiled from ear to ear for days.
Pregnancy Plan of Action
As I mentioned before, due to the pregnancy, chemotherapy was no longer an option. Of course, all of my doctors were concerned about the effects of the estrogen from pregnancy on my cancer, but we would have to just wait and see. My doctors joked, "Renee, there aren't a whole lot of studies on this, your circumstances are rare." NO KIDDING.
I learned that I was actually pregnant at the time of my mastectomy, but it was too early for it to show on a urine test. Had a blood tests been given, it would have shown up. When you enter all the dates on a pregnancy calculator, it shows that the egg probably implanted the day of my surgery. When I think about it that way, I know God definitely had a hand in it all. My body was going through major trauma, but this little life was determined to make it despite it all. I am thinking this baby boy is going to be strong and tough - he has already survived against the odds.
My due date is May 19, 2014. The doctors have decided that it is best to deliver three weeks early so that I can begin treatment. I am scheduled for a section on April 29. I am beyond ready. I am ready to see his little face and I am ready to not be pregnant anymore. My OB and I have vetoed the hysterectomy at the time of the section due to the high risk of the surgery.
I will begin tamoxifen the day after the section. However, due to the clotting risk associated with a section, coupled with the clotting risk associated with the tamoxifen, I will also have to begin on a blood thinner that day as well. This means daily injections into my stomach for 4-6 weeks. I will be giving myself the injections. I am not really letting myself worry about that for the time being, I will cross that bridge when I have to. The reason I have to start tamoxifen so soon after delivery is to prevent the estrogen surges and waves that follow delivery. Studies are still conflicting about whether an estrogen positive cancer like mine reacts more to estrogen surges or estrogen waves; either way, the doctors want to prevent any reaction to the estrogen.
The tamoxifen will put me into a "chemical menopause." Which means that the ovaries will still make the estrogen, but the tamoxifen will prevent the estrogen from being absorbed by the cells. What that will mean is that I will have a baby one day and go into menopause the next. My prayer is that the side effects of the menopause will not be too bad due to my age. From my research, it seems as though the side effects can range from none to very severe.
So at this point the waiting continues. 2 more weeks of waiting to see my baby boy's little face, 2 weeks and 1 day of waiting to start tamoxifen, and then a couple more weeks for tests to be run to see if I am still indeed cancer free.
I really do not like waiting...
Gender Reveal
There are a few moments of pregnancy that I enjoy - the top being when we find out the gender. I am not one of those people that can wait until I deliver, I pretty much find a way to find out as soon as scientifically possible, which is around 13 weeks if you are wondering. So in November we made an appointment to find out what we were having. Gabrielle and I wanted a girl; in fact, I was almost positive it was a girl because the pregnancy seemed very similar to my pregnancy with Gabrielle. Gabrielle said she was running away if it was a boy. Of course, Kevin wanted that boy that he always dreamed about having (he said he was running away if it was a girl). So basically either Gabrielle or Kevin was running away once we knew the results.
Luckily the baby was cooperative and showed us the right part right away - Its a BOY! Gabrielle was sitting on Kevin when the tech said it was a boy and she slapped her dad. I was in shock but I was also very happy that Kevin was getting a son. Kevin smiled from ear to ear for days.
Pregnancy Plan of Action
As I mentioned before, due to the pregnancy, chemotherapy was no longer an option. Of course, all of my doctors were concerned about the effects of the estrogen from pregnancy on my cancer, but we would have to just wait and see. My doctors joked, "Renee, there aren't a whole lot of studies on this, your circumstances are rare." NO KIDDING.
I learned that I was actually pregnant at the time of my mastectomy, but it was too early for it to show on a urine test. Had a blood tests been given, it would have shown up. When you enter all the dates on a pregnancy calculator, it shows that the egg probably implanted the day of my surgery. When I think about it that way, I know God definitely had a hand in it all. My body was going through major trauma, but this little life was determined to make it despite it all. I am thinking this baby boy is going to be strong and tough - he has already survived against the odds.
My due date is May 19, 2014. The doctors have decided that it is best to deliver three weeks early so that I can begin treatment. I am scheduled for a section on April 29. I am beyond ready. I am ready to see his little face and I am ready to not be pregnant anymore. My OB and I have vetoed the hysterectomy at the time of the section due to the high risk of the surgery.
I will begin tamoxifen the day after the section. However, due to the clotting risk associated with a section, coupled with the clotting risk associated with the tamoxifen, I will also have to begin on a blood thinner that day as well. This means daily injections into my stomach for 4-6 weeks. I will be giving myself the injections. I am not really letting myself worry about that for the time being, I will cross that bridge when I have to. The reason I have to start tamoxifen so soon after delivery is to prevent the estrogen surges and waves that follow delivery. Studies are still conflicting about whether an estrogen positive cancer like mine reacts more to estrogen surges or estrogen waves; either way, the doctors want to prevent any reaction to the estrogen.
The tamoxifen will put me into a "chemical menopause." Which means that the ovaries will still make the estrogen, but the tamoxifen will prevent the estrogen from being absorbed by the cells. What that will mean is that I will have a baby one day and go into menopause the next. My prayer is that the side effects of the menopause will not be too bad due to my age. From my research, it seems as though the side effects can range from none to very severe.
So at this point the waiting continues. 2 more weeks of waiting to see my baby boy's little face, 2 weeks and 1 day of waiting to start tamoxifen, and then a couple more weeks for tests to be run to see if I am still indeed cancer free.
I really do not like waiting...
Monday, April 14, 2014
DNA
The Genetics Behind the Cancer
Life is funny. Sometimes in that belly laugh way and sometimes when you look up in the sky and have to smile and say "Why God?"
As yall know by now, my mom is a two time breast cancer survivor. She is a champ! I always assumed that if I had the BRCA gene, I would have likely gotten it from her. In June 2013, a month before I went in to see Dr. Christian and two months before I was diagnosed with breast cancer, my mom had the genetic testing done to see if she was a carrier. She was not a carrier! It was so good to get this news. We all breathed a sigh of relief. My brother and I thought we were off the hook. Looking back, this was naïve of us, because both my paternal grandmother and paternal aunt had breast cancer, therefore it could have come from my dad's side just as well as my mom's side.
After it was confirmed that I was a BRCA carrier, both my dad and my brother had to go through genetic testing. Without a doubt, we knew my dad had to be a carrier. My brother had a 50/50 chance of being a carrier. My dad was indeed a carrier, my brother lucked out and is not a carrier.
Thanks dad for sharing that special trait with me! I always knew I was your favorite. I would have settled for just your eye color and complexion though...
So what exactly does having the BRCA 1 gene mean?
I had to meet with a geneticist to determine what exactly having the BRCA 1 gene meant. Luckily my maternal fetal medicine doctor made a call and asked for a favor and I was able to get an appointment with the geneticist fairly quickly. Basically I have a mutation at "5083del19, resulting in a stop codon at amino acid position 1670 of the BRCA 1 protein." I took this straight of my report, really doesn't make much sense to me. But as the geneticist explains it, everyone has a chain of letters in their DNA and as long as the letters stay in the correct order, things are good. In my case, when you get to the 1670th letter in my DNA sequence, things go haywire. The letters got jumbled in the DNA and my body just stops reading the sequence. SO in people without this mutation, the body would kill the cancer cell. In my case, the body gets mixed up and the cancer cell continues to grow without the body killing it.
So what this really means as for as numbers? People with this mutation have an 87% risk of breast cancer and a 44% risk of ovarian cancer by the age of 70. (I am just one of the lucky few that got it in my 20s) Also, there is a 20% chance of a second breast cancer within five years of the first, as well as a ten fold increase in the risk of subsequent ovarian cancer. I have always been a numbers and math person. However, I don't like these numbers. After hearing these numbers, I see why the doctors insisted that I remove both breasts.
Also, after hearing these numbers, I understand why my doctors are insisting on a full hysterectomy. While all of my doctors agree that I would need a full hysterectomy, they all have different time frames in mind. The geneticist said that I need to get my ovaries and uterus removed at the time of C-section (April 2014); it was just too risky to keep them in there. My oncologist originally said that I needed the hysterectomy before the age of 40, he has now said that I should get it done in the next three years. My OB/GYN would like to do it within two to three months of me having the baby. Right now, I am inclined to go with my oncologist's recommendation of 2-3 years. The C-section will be my third major surgery in ten months, my body is tired and worn down. I feel like I have aged ten years in the last year. I need a break. Not to mention, I will have a three year old and newborn to look after; recovering from another surgery at this point seems kind of impossible. Also, the thought of being in full blown menopause at 30 seems overwhelming to me. I am not ready to deal with that, not just yet. I hope and pray that nothing happens that will "make" me deal with it earlier than two years from now. I will be checked every 6 months to make sure that my ovaries are okay until I decide that I am ready for the hysterectomy.
Genetic Destiny
I saw Dr. Christian a few weeks ago (March 2014) and we talked a lot about my BRCA results and my "genetic destiny." I live with the guilt that I may have passed this gene onto my kids. In fact, I have let myself become wrought with guilt about it. Basically, at the age of 18 they can decide to be tested for the BRCA mutation. It can not be done before they turn 18, even if they want to and I want them to.
Regardless of the BRCA results for my children, the standard approach is to start monitoring for the type of cancer your parent has ten years earlier than when the parent was first diagnosed. For Gabrielle, this will mean that she will have to start getting monitored for breast cancer at the age of 19. This kills me. A 19 year old should never have to worry about cancer. She should be in college, having fun, partying - not going for scans and ultrasounds every few months.
I cried to Dr. Christian about this at my last appointment. She reminded me of our "genetic destiny." She told me that while I may have passed this mutation onto her, I need to remember that I also passed her some good genetic materials as well - her big brown eyes, her curiosity about life, her love for chocolate and her spunkiness. Her dad passed her some good qualities as well. (Dr. Christian also joked and reminded me that I don't get to blame her for those qualities she inherited from her dad that I don't think are so great, I picked him as her 50% genetic donor!)
My prayer is that by the time my babies are old enough to have to confront this head on, there will be a cure for cancer, that it will not matter if they have the gene or not, cancer will no longer be anything to worry about and fear. That is my prayer, every day.
Life is funny. Sometimes in that belly laugh way and sometimes when you look up in the sky and have to smile and say "Why God?"
As yall know by now, my mom is a two time breast cancer survivor. She is a champ! I always assumed that if I had the BRCA gene, I would have likely gotten it from her. In June 2013, a month before I went in to see Dr. Christian and two months before I was diagnosed with breast cancer, my mom had the genetic testing done to see if she was a carrier. She was not a carrier! It was so good to get this news. We all breathed a sigh of relief. My brother and I thought we were off the hook. Looking back, this was naïve of us, because both my paternal grandmother and paternal aunt had breast cancer, therefore it could have come from my dad's side just as well as my mom's side.
After it was confirmed that I was a BRCA carrier, both my dad and my brother had to go through genetic testing. Without a doubt, we knew my dad had to be a carrier. My brother had a 50/50 chance of being a carrier. My dad was indeed a carrier, my brother lucked out and is not a carrier.
Thanks dad for sharing that special trait with me! I always knew I was your favorite. I would have settled for just your eye color and complexion though...
So what exactly does having the BRCA 1 gene mean?
I had to meet with a geneticist to determine what exactly having the BRCA 1 gene meant. Luckily my maternal fetal medicine doctor made a call and asked for a favor and I was able to get an appointment with the geneticist fairly quickly. Basically I have a mutation at "5083del19, resulting in a stop codon at amino acid position 1670 of the BRCA 1 protein." I took this straight of my report, really doesn't make much sense to me. But as the geneticist explains it, everyone has a chain of letters in their DNA and as long as the letters stay in the correct order, things are good. In my case, when you get to the 1670th letter in my DNA sequence, things go haywire. The letters got jumbled in the DNA and my body just stops reading the sequence. SO in people without this mutation, the body would kill the cancer cell. In my case, the body gets mixed up and the cancer cell continues to grow without the body killing it.
So what this really means as for as numbers? People with this mutation have an 87% risk of breast cancer and a 44% risk of ovarian cancer by the age of 70. (I am just one of the lucky few that got it in my 20s) Also, there is a 20% chance of a second breast cancer within five years of the first, as well as a ten fold increase in the risk of subsequent ovarian cancer. I have always been a numbers and math person. However, I don't like these numbers. After hearing these numbers, I see why the doctors insisted that I remove both breasts.
Also, after hearing these numbers, I understand why my doctors are insisting on a full hysterectomy. While all of my doctors agree that I would need a full hysterectomy, they all have different time frames in mind. The geneticist said that I need to get my ovaries and uterus removed at the time of C-section (April 2014); it was just too risky to keep them in there. My oncologist originally said that I needed the hysterectomy before the age of 40, he has now said that I should get it done in the next three years. My OB/GYN would like to do it within two to three months of me having the baby. Right now, I am inclined to go with my oncologist's recommendation of 2-3 years. The C-section will be my third major surgery in ten months, my body is tired and worn down. I feel like I have aged ten years in the last year. I need a break. Not to mention, I will have a three year old and newborn to look after; recovering from another surgery at this point seems kind of impossible. Also, the thought of being in full blown menopause at 30 seems overwhelming to me. I am not ready to deal with that, not just yet. I hope and pray that nothing happens that will "make" me deal with it earlier than two years from now. I will be checked every 6 months to make sure that my ovaries are okay until I decide that I am ready for the hysterectomy.
Genetic Destiny
I saw Dr. Christian a few weeks ago (March 2014) and we talked a lot about my BRCA results and my "genetic destiny." I live with the guilt that I may have passed this gene onto my kids. In fact, I have let myself become wrought with guilt about it. Basically, at the age of 18 they can decide to be tested for the BRCA mutation. It can not be done before they turn 18, even if they want to and I want them to.
Regardless of the BRCA results for my children, the standard approach is to start monitoring for the type of cancer your parent has ten years earlier than when the parent was first diagnosed. For Gabrielle, this will mean that she will have to start getting monitored for breast cancer at the age of 19. This kills me. A 19 year old should never have to worry about cancer. She should be in college, having fun, partying - not going for scans and ultrasounds every few months.
I cried to Dr. Christian about this at my last appointment. She reminded me of our "genetic destiny." She told me that while I may have passed this mutation onto her, I need to remember that I also passed her some good genetic materials as well - her big brown eyes, her curiosity about life, her love for chocolate and her spunkiness. Her dad passed her some good qualities as well. (Dr. Christian also joked and reminded me that I don't get to blame her for those qualities she inherited from her dad that I don't think are so great, I picked him as her 50% genetic donor!)
My prayer is that by the time my babies are old enough to have to confront this head on, there will be a cure for cancer, that it will not matter if they have the gene or not, cancer will no longer be anything to worry about and fear. That is my prayer, every day.
Friday, April 11, 2014
September 17, 2013
Total state of shock
I was in a total state of shock. I could not believe I was pregnant. All I could do was cry. I met with my oncologist on the morning of September 17, 2013 to discuss what our options were at this point. I sobbed the entire time. The nurse I had spoken to on the phone the day before came in to check on me because I was so hysterical when I talked to her on the phone. The oncologist kept telling me to calm down, I could not.
Of course, as much as I did not want to be pregnant, terminating the pregnancy was not an option. I may have talked about it, dreamt about it, threatened it, etc., but the bottom line is there was a life inside of me, and to kill that life would go against everything that I believe. Even at the lowest of my low, I knew there was a little heartbeat in there and I knew God must have a plan.
Thankfully, the doctor agreed. There was no reason to terminate the pregnancy. The surgery was over. The cancer was out of my body. The worst was over. The question then became what to do about chemotherapy. The oncologist informed me that studies had proved that if you do not start chemo within 12 weeks from surgery, there are no benefits to starting it. That did not make sense to me, it still does not make sense to me, but that is what the doctor said. He also said that on rare occasions, he has administered chemo to pregnant patients in their second trimester - but that was for very rare and aggressive cancers and when the cancer was still present in the body. He did not recommend chemo for me since the cancer was technically out of my body, and he did not want to risk the pregnancy. He also could not start me on the tamoxifen because he was certain that would cause an abortion or serious birth defects at the least. So all the plans we had made were out of the window. This was hard news for me to take. I liked plans. I had a plan. My plan was ruined.
He assured me that he would monitor me closely during the pregnancy and that I would be ok. This was coming from the doctor that just a few weeks before told me that I had to have chemo despite my begging otherwise. It was all so confusing to me. I had so many questions. I had so many fears. I had so many tears.
I had a cancer that was fed by estrogen - I was about to experience 9 months of estrogen overload, that could not be good? What would this mean for my future?
Would skipping out on chemo end up killing me down the road?
How were they going to monitor me while pregnant?
Was this fair to Gabrielle, was giving her a sibling going to cost her a mom?
I cut all of my hair off in preparation for chemo that I would never have?
I had a port going through my jugular vein that I would never need and a pretty three inch scar on my chest to show for it, that was a waste.
I wanted to scream. THIS COULD NOT BE HAPPENING.
The oncologist said that the new plan would be to monitor me closely during the pregnancy and start on the ten years of tamoxifen the day I gave birth. That sounded like a terrible plan to me but I had no other alternative. I left the appointment feeling hopeless. The words of the surgeon that gave me a second opinion months before haunted me (they still haunt me) - "It only takes a single cell to be left in your body after the mastectomy for your cancer to spread, you need chemo."
At this point though, it didn't matter if I needed chemo - I had a baby growing inside of me, and I needed to protect the baby.
I will be honest - I cried. I didn't cry for days or weeks, I cried for months. I will blame the pregnancy hormones along with being scared out of my mind, but I cried uncontrollably for months. I wanted to love being pregnant, I wanted to love the baby that was growing inside of me, I wanted to see it as the miracle it was, but I was scared. I was scared the baby and pregnancy were killing me. The doctors were telling me that I was going to be okay, but the truth of the matter was no one really knew. Again, we were going to have to wait and see. So nine months of waiting began.
Waiting and waiting...
I was in a total state of shock. I could not believe I was pregnant. All I could do was cry. I met with my oncologist on the morning of September 17, 2013 to discuss what our options were at this point. I sobbed the entire time. The nurse I had spoken to on the phone the day before came in to check on me because I was so hysterical when I talked to her on the phone. The oncologist kept telling me to calm down, I could not.
Of course, as much as I did not want to be pregnant, terminating the pregnancy was not an option. I may have talked about it, dreamt about it, threatened it, etc., but the bottom line is there was a life inside of me, and to kill that life would go against everything that I believe. Even at the lowest of my low, I knew there was a little heartbeat in there and I knew God must have a plan.
Thankfully, the doctor agreed. There was no reason to terminate the pregnancy. The surgery was over. The cancer was out of my body. The worst was over. The question then became what to do about chemotherapy. The oncologist informed me that studies had proved that if you do not start chemo within 12 weeks from surgery, there are no benefits to starting it. That did not make sense to me, it still does not make sense to me, but that is what the doctor said. He also said that on rare occasions, he has administered chemo to pregnant patients in their second trimester - but that was for very rare and aggressive cancers and when the cancer was still present in the body. He did not recommend chemo for me since the cancer was technically out of my body, and he did not want to risk the pregnancy. He also could not start me on the tamoxifen because he was certain that would cause an abortion or serious birth defects at the least. So all the plans we had made were out of the window. This was hard news for me to take. I liked plans. I had a plan. My plan was ruined.
He assured me that he would monitor me closely during the pregnancy and that I would be ok. This was coming from the doctor that just a few weeks before told me that I had to have chemo despite my begging otherwise. It was all so confusing to me. I had so many questions. I had so many fears. I had so many tears.
I had a cancer that was fed by estrogen - I was about to experience 9 months of estrogen overload, that could not be good? What would this mean for my future?
Would skipping out on chemo end up killing me down the road?
How were they going to monitor me while pregnant?
Was this fair to Gabrielle, was giving her a sibling going to cost her a mom?
I cut all of my hair off in preparation for chemo that I would never have?
I had a port going through my jugular vein that I would never need and a pretty three inch scar on my chest to show for it, that was a waste.
I wanted to scream. THIS COULD NOT BE HAPPENING.
The oncologist said that the new plan would be to monitor me closely during the pregnancy and start on the ten years of tamoxifen the day I gave birth. That sounded like a terrible plan to me but I had no other alternative. I left the appointment feeling hopeless. The words of the surgeon that gave me a second opinion months before haunted me (they still haunt me) - "It only takes a single cell to be left in your body after the mastectomy for your cancer to spread, you need chemo."
At this point though, it didn't matter if I needed chemo - I had a baby growing inside of me, and I needed to protect the baby.
I will be honest - I cried. I didn't cry for days or weeks, I cried for months. I will blame the pregnancy hormones along with being scared out of my mind, but I cried uncontrollably for months. I wanted to love being pregnant, I wanted to love the baby that was growing inside of me, I wanted to see it as the miracle it was, but I was scared. I was scared the baby and pregnancy were killing me. The doctors were telling me that I was going to be okay, but the truth of the matter was no one really knew. Again, we were going to have to wait and see. So nine months of waiting began.
Waiting and waiting...
Wednesday, April 9, 2014
September 16, 2013
The Day My Life REALLY Changed Forever
I decided that I would try to go into the office for the first time since my mastectomy on September 16, 2013. I knew I did not have the stamina to make it all day, but I thought it would be good for me to go in for a few hours and catch up on some files. My little alarm clock (AKA Gabrielle) woke me up around 6:30 that morning. Usually one of the first things I do in the morning is drink water. This morning as I took my first sip of water, I knew something was not right. It was an all too familiar of a feeling. I knew the feeling. Its the same way I felt for months after finding out I was pregnant for Gabrielle.
My mind starting racing. With the cancer and surgery and recovery, I had not thought about my cycle. I mean hell, I was about to be put into a chemical menopause, the last thing on my mind was my cycle or the possibility of being pregnant. I started going through the dates in my mind - Dr. Christian told me to get off of birth control, I did. I had a cycle, 2.5 weeks later I had my mastectomy. Could pregnancy even be possible?!?!?! No way, it couldn't be possible. Or could it be? (I mean there was a time or two where it could have happened, but NO, it couldn't have happened) A lot of four letter words ran through my head. I was definitely late, but that was probably from getting off of birth control for the first time in three years, undergoing a major surgery and from all the medicine. Yes, that had to be it - I was not late because of pregnancy, I was late because of everything else.
But why did the water I just drank make me nauseous? I became sick to my stomach over the thought of being pregnant. Nevertheless I got myself and Gabrielle dressed and we were off to school and work. On the way to Gab's school, the nausea got worse. As soon as I dropped her off at school, I headed to the pharmacy for a pregnancy test and then home, there would be no work for me today. I had to get to the bottom of this ASAP.
All the while, I was running through the dates in my head. My doctors have always told me that it takes a couple of months for birth control to leave your body, I had only been off of birth control for about 6 weeks at this point. They made me take a urine test the day of my surgery to make sure I was not pregnant - it came back negative, or so I thought. Certainly they wouldn't not have done the mastectomy if I was pregnant?!?! I am not sure how I made it to the pharmacy and home without wrecking - literally my head was spinning. The thought of being pregnant was making me sick. But that couldn't be it - just the timing of everything made it IMPOSSIBLE.
Three minutes later I had my answer on a stick. WHY IN THE HELL ARE THERE TWO LINES??? I was pregnant. I took another test to be sure, this could not be happening. It was happening, I was pregnant. I started crying like I have never cried in my life. This should not be happening. I should not be pregnant. I am starting chemo in two weeks. I do not know if I will be around to take care of the child I already have and watch her grow up, I can not be having another one. This was not part of MY plan. How in the world did this happen?? (of course, I know how it happens). I cried harder and louder than I ever did with the cancer stuff. I called Kevin at work and told him he needed to get home ASAP. I begged God to make this all a nightmare, I prayed that the tests were wrong. By the time Kevin got home I was in a fetal position. I had spent months making my fight plan, this was going to kill my plans. The little control I thought I had, I lost.
I know, I know. I know. I know what I should be saying right now and I know what people want to hear. Babies are such a blessing, I should consider this a miracle, I should have been rejoicing that God was giving us another child in all of the turmoil. I wish I could have thought these thoughts. But I didn't. I did not want another child - especially not right now. I just kept thinking "God, why are you doing this to me? First cancer and now pregnancy. Have I not been punished enough for my sins??" Again, I know that people are going to judge me for this post. People will say and think "Babies are never punishment and I should not have written that." I promised to keep this blog as accurate as possible, and that day, in that moment, I saw this as more punishment for my sins. I wept in the fetal position for hours. How was I going to get through this? I needed to call my OB, I needed to call my oncologist. But for the time being, all I could do was lay in bed and cry.
I eventually made the call to my OB and then my oncologist. After talking to the nurse and sobbing, she said that I could come in that day for blood work to make sure I was really pregnant. I then spoke to my oncologist's office. Kevin and I went to the OB's office. They did a urine test, blood test, and an ultrasound - I was definitely pregnant. I cried to everyone - the nurse, the doctor, the receptionist. THIS COULD NOT BE HAPPENING. Even my OB went over the dates several times and said "in all practicality, its impossible. But you are definitely pregnant. God must have wanted you to have this baby."
I called my oncologist's office hysterical. What will this mean for our plan? Will I still be able to do chemo? The nurse said for me to come in first thing in the morning and the doctor would talk to me about my options. So I would wait until the morning to have the answers I so desperately wanted. I cried all night long.
God has been teaching me a lot. I wish he would have chosen easier forms of lessons than cancer and pregnancy. But he is teaching me that even when we think we are in control, we aren't. His plans are always bigger and better than our plans, even when we cant see that. God does work in mysterious ways. I am not sure if I will ever understand the mystery of the cancer, or the pregnancy, or most of 2013, but I have to trust that he does. And I have to trust that all of this is happening for a reason. And I have to trust that he will let me live long enough to see my babies grow up.
I decided that I would try to go into the office for the first time since my mastectomy on September 16, 2013. I knew I did not have the stamina to make it all day, but I thought it would be good for me to go in for a few hours and catch up on some files. My little alarm clock (AKA Gabrielle) woke me up around 6:30 that morning. Usually one of the first things I do in the morning is drink water. This morning as I took my first sip of water, I knew something was not right. It was an all too familiar of a feeling. I knew the feeling. Its the same way I felt for months after finding out I was pregnant for Gabrielle.
My mind starting racing. With the cancer and surgery and recovery, I had not thought about my cycle. I mean hell, I was about to be put into a chemical menopause, the last thing on my mind was my cycle or the possibility of being pregnant. I started going through the dates in my mind - Dr. Christian told me to get off of birth control, I did. I had a cycle, 2.5 weeks later I had my mastectomy. Could pregnancy even be possible?!?!?! No way, it couldn't be possible. Or could it be? (I mean there was a time or two where it could have happened, but NO, it couldn't have happened) A lot of four letter words ran through my head. I was definitely late, but that was probably from getting off of birth control for the first time in three years, undergoing a major surgery and from all the medicine. Yes, that had to be it - I was not late because of pregnancy, I was late because of everything else.
But why did the water I just drank make me nauseous? I became sick to my stomach over the thought of being pregnant. Nevertheless I got myself and Gabrielle dressed and we were off to school and work. On the way to Gab's school, the nausea got worse. As soon as I dropped her off at school, I headed to the pharmacy for a pregnancy test and then home, there would be no work for me today. I had to get to the bottom of this ASAP.
All the while, I was running through the dates in my head. My doctors have always told me that it takes a couple of months for birth control to leave your body, I had only been off of birth control for about 6 weeks at this point. They made me take a urine test the day of my surgery to make sure I was not pregnant - it came back negative, or so I thought. Certainly they wouldn't not have done the mastectomy if I was pregnant?!?! I am not sure how I made it to the pharmacy and home without wrecking - literally my head was spinning. The thought of being pregnant was making me sick. But that couldn't be it - just the timing of everything made it IMPOSSIBLE.
Three minutes later I had my answer on a stick. WHY IN THE HELL ARE THERE TWO LINES??? I was pregnant. I took another test to be sure, this could not be happening. It was happening, I was pregnant. I started crying like I have never cried in my life. This should not be happening. I should not be pregnant. I am starting chemo in two weeks. I do not know if I will be around to take care of the child I already have and watch her grow up, I can not be having another one. This was not part of MY plan. How in the world did this happen?? (of course, I know how it happens). I cried harder and louder than I ever did with the cancer stuff. I called Kevin at work and told him he needed to get home ASAP. I begged God to make this all a nightmare, I prayed that the tests were wrong. By the time Kevin got home I was in a fetal position. I had spent months making my fight plan, this was going to kill my plans. The little control I thought I had, I lost.
I know, I know. I know. I know what I should be saying right now and I know what people want to hear. Babies are such a blessing, I should consider this a miracle, I should have been rejoicing that God was giving us another child in all of the turmoil. I wish I could have thought these thoughts. But I didn't. I did not want another child - especially not right now. I just kept thinking "God, why are you doing this to me? First cancer and now pregnancy. Have I not been punished enough for my sins??" Again, I know that people are going to judge me for this post. People will say and think "Babies are never punishment and I should not have written that." I promised to keep this blog as accurate as possible, and that day, in that moment, I saw this as more punishment for my sins. I wept in the fetal position for hours. How was I going to get through this? I needed to call my OB, I needed to call my oncologist. But for the time being, all I could do was lay in bed and cry.
I eventually made the call to my OB and then my oncologist. After talking to the nurse and sobbing, she said that I could come in that day for blood work to make sure I was really pregnant. I then spoke to my oncologist's office. Kevin and I went to the OB's office. They did a urine test, blood test, and an ultrasound - I was definitely pregnant. I cried to everyone - the nurse, the doctor, the receptionist. THIS COULD NOT BE HAPPENING. Even my OB went over the dates several times and said "in all practicality, its impossible. But you are definitely pregnant. God must have wanted you to have this baby."
I called my oncologist's office hysterical. What will this mean for our plan? Will I still be able to do chemo? The nurse said for me to come in first thing in the morning and the doctor would talk to me about my options. So I would wait until the morning to have the answers I so desperately wanted. I cried all night long.
God has been teaching me a lot. I wish he would have chosen easier forms of lessons than cancer and pregnancy. But he is teaching me that even when we think we are in control, we aren't. His plans are always bigger and better than our plans, even when we cant see that. God does work in mysterious ways. I am not sure if I will ever understand the mystery of the cancer, or the pregnancy, or most of 2013, but I have to trust that he does. And I have to trust that all of this is happening for a reason. And I have to trust that he will let me live long enough to see my babies grow up.
Tuesday, April 8, 2014
September 2013
September 8, 2013
I turned 30 on September 8th. What can I say about this day? I had a wide range of emotions. First, I felt blessed, I felt blessed to have Kevin and Gabrielle, my family, and to be alive. I never thought my mortality would be something I would think about so much on my 30th birthday, but it overwhelmed my thoughts. Kevin invited our families over and grilled and his mom brought over a birthday cake to celebrate. When everyone sang me happy birthday and I blew out my candles I began to cry, and I could not stop. I was overwhelmed. I was surrounded by my blessings, and I was alive to experience it. I guess I had always kind of envisioned a big blow out weekend in Vegas with Kevin and friends for my 30th birthday, but at that moment, in my kitchen, with my family and Kevin's family, there was no other place I wanted to be. I felt like the luckiest girl alive, just to be alive. I silently prayed, "God, please let me have a lot more birthdays just like this one."
I will never take another birthday for granted.
The "Pump Ups"
So far the cancer cruelty list goes like this:
1. Waiting
2. Drains
Well #3 would be the tissue expanders. I am pretty sure the tissue expander was invented in ancient China as a torture device at the same time as the bamboo shoots.
Most people that know me would say that my hair is one of my most distinguishing features. Kevin still jokes that its his favorite part about me. I have always had long thick black hair. I was born with a headful of thick hair and I have had it since. I have had different hairstyles along the way, but most people would equate me with my long thick black hair.
As part of my chemo research, all of the books recommended getting a "chemo cut" before starting chemo. I was scheduled to start chemo on October 4th. The books say that its less of a shock to go from short hair to no hair than from long hair to no hair. So on Saturday, September 14, I scheduled an appointment with my cousin Jennifer who cuts hair for my "chemo cut." I did this because the books said this is what I should have done, but not having hair was going to be shocking to me regardless. When I got to the salon, Jenn and decided that I should cut it right around chin length and a little shorter in the back. I watched my hair fall as she snipped. I felt like a warrior getting ready for battle. It was hard to see my hair fall to the ground, but chemo was the next part of my fight, and I was going to face it head on (albeit maybe bald head...).
I left the salon feeling pretty good. I felt like I was being proactive. I felt like I was in control. Jenn did a great job with my "chemo cut." Chemo was going to be no match for me.
Nevertheless, if I would have known on Saturday what I found out on Monday, I would have never gotten that haircut...
I turned 30 on September 8th. What can I say about this day? I had a wide range of emotions. First, I felt blessed, I felt blessed to have Kevin and Gabrielle, my family, and to be alive. I never thought my mortality would be something I would think about so much on my 30th birthday, but it overwhelmed my thoughts. Kevin invited our families over and grilled and his mom brought over a birthday cake to celebrate. When everyone sang me happy birthday and I blew out my candles I began to cry, and I could not stop. I was overwhelmed. I was surrounded by my blessings, and I was alive to experience it. I guess I had always kind of envisioned a big blow out weekend in Vegas with Kevin and friends for my 30th birthday, but at that moment, in my kitchen, with my family and Kevin's family, there was no other place I wanted to be. I felt like the luckiest girl alive, just to be alive. I silently prayed, "God, please let me have a lot more birthdays just like this one."
I will never take another birthday for granted.
The "Pump Ups"
So far the cancer cruelty list goes like this:
1. Waiting
2. Drains
Well #3 would be the tissue expanders. I am pretty sure the tissue expander was invented in ancient China as a torture device at the same time as the bamboo shoots.
A breast tissue expander is an inflatable breast implant designed to stretch the skin and muscle to make room for a future, more permanent implant.
The deflated expander was placed under my chest muscles at the time of the surgery. Once a week I had to go to my plastic surgeon to get "pumped up." This was an odd experience each time. Basically the doctor would use a magnet to find the port and insert a huge needle into my breast and inject saline into the tissue expander. So once a week for 5 weeks, I got to watch myself "grow" like during puberty, but in fast forward. Very bizarre. The actual "pump up" process never hurt, I had lost all feelings in my chest since the surgery. However, I can still feel sensation. And that is why tissue expanders get the award for #3 in the cruelty ranking. They are heavy and hard. The best way I can explain it is that its like having bricks inserted under your chest muscles. Its impossible to get comfortable to sleep if you have to lay down on bricks. I would toss and turn and could never get comfortable. They were also very heavy, if I laid on my back to sleep, I felt like the expanders were smothering me. I HATED the expanders and I could not wait until they could be replaced with permanent implants. But this was part of the reconstruction process, so I endured. The plan was to replace the expanders with permanent implants as soon as I finished chemo. So I would have to wait a few months.
September 14, 2013 - the "Chemo Cut"
Most people that know me would say that my hair is one of my most distinguishing features. Kevin still jokes that its his favorite part about me. I have always had long thick black hair. I was born with a headful of thick hair and I have had it since. I have had different hairstyles along the way, but most people would equate me with my long thick black hair.
As part of my chemo research, all of the books recommended getting a "chemo cut" before starting chemo. I was scheduled to start chemo on October 4th. The books say that its less of a shock to go from short hair to no hair than from long hair to no hair. So on Saturday, September 14, I scheduled an appointment with my cousin Jennifer who cuts hair for my "chemo cut." I did this because the books said this is what I should have done, but not having hair was going to be shocking to me regardless. When I got to the salon, Jenn and decided that I should cut it right around chin length and a little shorter in the back. I watched my hair fall as she snipped. I felt like a warrior getting ready for battle. It was hard to see my hair fall to the ground, but chemo was the next part of my fight, and I was going to face it head on (albeit maybe bald head...).
I left the salon feeling pretty good. I felt like I was being proactive. I felt like I was in control. Jenn did a great job with my "chemo cut." Chemo was going to be no match for me.
Nevertheless, if I would have known on Saturday what I found out on Monday, I would have never gotten that haircut...
The weeks following the Mastectomy
After the first 72 hours I became more awake and aware of my surroundings. I believe on day 4 Gabrielle came home from my dad and stepmom's house in Mississippi and it was really good to have her back at home. She said that I was the patient, she was the nurse and Kevin was the doctor; everyone played their part well.
The weeks following the surgery were a rollercoaster. The pain went from feeling like I was hit by a mack truck to the feeling like I was beat with a baseball bat across my chest. However, by day 5 most of the pain had gone away and I was just sore EXCEPT for the drains. The stitch that connected the tube to the opening in my skin where it came out pulled and tugged every time I moved. Essentially there was no way to get comfortable because I had a drain coming out on both sides. By day 6, I was shaking from the pain of the drain and we called my plastic surgeon - I needed the drains out. Fortunately he fit me in that day. Kevin drove me to the plastic surgeon's office and I remember thinking that if he wouldn't remove the drains that day I would maybe lose my mind. Luckily, he said the drains could come out. As much as I wanted the drains out, I quickly began to worry about just how they were going to get them out. I mean there was probably at least a foot a tube inside of me that had to come out through the holes on the side of me - and I was going to be totally awake during this process. The nurse cut the stitch holding the tube inside of me and yanked - out came a long tube with relatively no pain at all. It was a weird sensation to feel the tube exiting my body, but really it was painless. At this point I was over the physical hump - I was well on my way to recovering and the drains were out!
The emotional support I received following the surgery was tremendous. Even when I think about it months later, I get emotional. I received flowers, cards, text messages and emails from family, friends, co-workers, and neighbors. Everyone was sending their love and support which meant so much to me. Some friends that I had not seen or talked to in years reached out to offer their love, prayers, and support. Its things like that that got me through those days.
And lets just talk about the food. Neighbors and co-workers brought over food for weeks. We ate better in those weeks following surgery than we have before or since. My co-workers are awesome attorneys, but I believe they may be better cooks than attorneys. It truly was a blessing to have so much love and support. Every time I would reach a real low point, I would receive flowers or a card or a platter of cookies, or a sweet visitor and I would feel better.
That's not to say that there weren't any real low points. There were. Nights were still hard for me. It was the quiet of the night that always got to me. My mind could think about things that I could block out during the day. The nights were long.
Showers/baths were also the other really low point of my day. First, I had not gained all my strength back, so taking a shower literally took everything out of me for weeks. After taking a shower, I would have to take a nap. Looking back, I am not sure if it was the actual physical toll of taking the shower or if it was the mental toll. When you are showering, there is no way to ignore the deep scars that exist where your breasts are supposed to be. I would cringe when I would look in the mirror. Its just unnatural for a woman to not have breasts. I had a total of 6 scars from the surgery. I had about a five inch scar on each breasts from the mastectomy, I had a 2-3 inch scar right under my right collar bone from where the port was inserted, I had a three inch scar under my left arm from the sentinel node biopsy and a scar on both sides of my ribcage from where the drains were inserted. I felt like a monster.
I kept reminding myself that all of this was needed to remove the enemy from my body. I had won. At this point I was cancer free - the cancer was out of my body. But I sure did have the battle scars to prove the fight. I just kept thinking that there should have been a way to get rid of the cancer without totally mutilating my body - but there wasn't. Nevertheless - I won! I kicked cancer's ass.
The weeks following the surgery were a rollercoaster. The pain went from feeling like I was hit by a mack truck to the feeling like I was beat with a baseball bat across my chest. However, by day 5 most of the pain had gone away and I was just sore EXCEPT for the drains. The stitch that connected the tube to the opening in my skin where it came out pulled and tugged every time I moved. Essentially there was no way to get comfortable because I had a drain coming out on both sides. By day 6, I was shaking from the pain of the drain and we called my plastic surgeon - I needed the drains out. Fortunately he fit me in that day. Kevin drove me to the plastic surgeon's office and I remember thinking that if he wouldn't remove the drains that day I would maybe lose my mind. Luckily, he said the drains could come out. As much as I wanted the drains out, I quickly began to worry about just how they were going to get them out. I mean there was probably at least a foot a tube inside of me that had to come out through the holes on the side of me - and I was going to be totally awake during this process. The nurse cut the stitch holding the tube inside of me and yanked - out came a long tube with relatively no pain at all. It was a weird sensation to feel the tube exiting my body, but really it was painless. At this point I was over the physical hump - I was well on my way to recovering and the drains were out!
The emotional support I received following the surgery was tremendous. Even when I think about it months later, I get emotional. I received flowers, cards, text messages and emails from family, friends, co-workers, and neighbors. Everyone was sending their love and support which meant so much to me. Some friends that I had not seen or talked to in years reached out to offer their love, prayers, and support. Its things like that that got me through those days.
And lets just talk about the food. Neighbors and co-workers brought over food for weeks. We ate better in those weeks following surgery than we have before or since. My co-workers are awesome attorneys, but I believe they may be better cooks than attorneys. It truly was a blessing to have so much love and support. Every time I would reach a real low point, I would receive flowers or a card or a platter of cookies, or a sweet visitor and I would feel better.
That's not to say that there weren't any real low points. There were. Nights were still hard for me. It was the quiet of the night that always got to me. My mind could think about things that I could block out during the day. The nights were long.
Showers/baths were also the other really low point of my day. First, I had not gained all my strength back, so taking a shower literally took everything out of me for weeks. After taking a shower, I would have to take a nap. Looking back, I am not sure if it was the actual physical toll of taking the shower or if it was the mental toll. When you are showering, there is no way to ignore the deep scars that exist where your breasts are supposed to be. I would cringe when I would look in the mirror. Its just unnatural for a woman to not have breasts. I had a total of 6 scars from the surgery. I had about a five inch scar on each breasts from the mastectomy, I had a 2-3 inch scar right under my right collar bone from where the port was inserted, I had a three inch scar under my left arm from the sentinel node biopsy and a scar on both sides of my ribcage from where the drains were inserted. I felt like a monster.
I kept reminding myself that all of this was needed to remove the enemy from my body. I had won. At this point I was cancer free - the cancer was out of my body. But I sure did have the battle scars to prove the fight. I just kept thinking that there should have been a way to get rid of the cancer without totally mutilating my body - but there wasn't. Nevertheless - I won! I kicked cancer's ass.
Monday, April 7, 2014
August 29th and 30th
The days following my mastectomy
I know people use the phrase "I feel like I have been hit by a mack truck" all the time. When I woke up from all of the anesthesia and medicine on August 29th, I really believed that I had been hit by an 18-wheeler. I looked down at my chest because I knew the grill marks still had to be imprinted on my chest. There were no grill marks, just my chest wrapped up like a mummy. Where breasts used to be - I was now flat. I was not allowed to unwrap the bandages for 48 hours, I so badly wanted to see how I looked - just how scary of a monster I would be - but I couldn't peek.
Nurses came in and out. They were very anxious for me to get out of the bed, walk around, and use the bathroom so that I could be released. It all seemed crazy to me - I had been hit by an 18-wheeler and they wanted me walking around and released that morning. A chipper little physical therapist came in to show me the exercises I needed to be doing over the next few days to aid in the healing and prevent lymphedema. I did not like her from the moment she entered the room with that gleeful little smile and acted cheerful. I was in no mood for cheer. She wanted me to raise my arms...SHE MUST BE CRAZY.I literally did not feel like I could move my fingers, much less my arms. And then she expected me to get out of bed - this must be some sort of joke. It was not. She made me get out of bed and move my arms. It took everything out of me just to stand up but I did it.
Another nurse came in to train Kevin on how to empty my drains. If waiting is the most cruel part of cancer, the drains are the second most cruel part of cancer. Basically drains are inserted into the surgical area to drain all excess fluid and blood. Tubing is put in at surgical site and then incisions are made on the side of your body where the tubing comes out and a bulb is attached which collects the fluids. The tubing is held in place by a stitch, a very painful, make you scream every time you move, kind of stitch.
Kevin's job for the next few days was to empty the drains every few hours and keep track of how much blood was coming out. Once the daily output became low enough, I could get the God-forsaken drains removed.
Before I knew it, they asked Kevin to go and get the car and they came in with a wheelchair to escort me out. I did not feel ready to leave the hospital, but they obviously thought I was. So home we went.
The next few days are very cloudy to me and I do not really remember much of those days...luckily. I was on some pretty strong pain meds and muscle relaxers. Kevin turned out to be an amazing nurse and made sure that I took my medicine and that my drains were emptied on schedule. I believe I slept for the majority of the next 48 hours.
When I woke up 48 hours later I was able to take a shower and remove the bandages. Of course, I could not do any of this alone, I could barely lift my arms. Thankfully, Kevin was there to help. I was so nervous about removing the bandages, I had no idea what things were going to look like underneath. We gently removed the bandages and I looked in the mirror and wept. I had looked at a million pictures on-line of post-mastectomy pictures but nothing can prepare you for seeing yourself. I made it into the shower and sobbed the entire time that Kevin washed me. I was sobbing because of how I looked and I was sobbing because my husband was having to wash me and I could not even wash myself. This was a new low. Kevin was so kind; he was more kind than I ever deserved. The shower literally took everything out of me and I went straight back to bed. I wanted to sleep. I wanted this to all be a nightmare. I never wanted to see myself in the mirror again. For now, I would sleep.
I know people use the phrase "I feel like I have been hit by a mack truck" all the time. When I woke up from all of the anesthesia and medicine on August 29th, I really believed that I had been hit by an 18-wheeler. I looked down at my chest because I knew the grill marks still had to be imprinted on my chest. There were no grill marks, just my chest wrapped up like a mummy. Where breasts used to be - I was now flat. I was not allowed to unwrap the bandages for 48 hours, I so badly wanted to see how I looked - just how scary of a monster I would be - but I couldn't peek.
Nurses came in and out. They were very anxious for me to get out of the bed, walk around, and use the bathroom so that I could be released. It all seemed crazy to me - I had been hit by an 18-wheeler and they wanted me walking around and released that morning. A chipper little physical therapist came in to show me the exercises I needed to be doing over the next few days to aid in the healing and prevent lymphedema. I did not like her from the moment she entered the room with that gleeful little smile and acted cheerful. I was in no mood for cheer. She wanted me to raise my arms...SHE MUST BE CRAZY.I literally did not feel like I could move my fingers, much less my arms. And then she expected me to get out of bed - this must be some sort of joke. It was not. She made me get out of bed and move my arms. It took everything out of me just to stand up but I did it.
Another nurse came in to train Kevin on how to empty my drains. If waiting is the most cruel part of cancer, the drains are the second most cruel part of cancer. Basically drains are inserted into the surgical area to drain all excess fluid and blood. Tubing is put in at surgical site and then incisions are made on the side of your body where the tubing comes out and a bulb is attached which collects the fluids. The tubing is held in place by a stitch, a very painful, make you scream every time you move, kind of stitch.
Kevin's job for the next few days was to empty the drains every few hours and keep track of how much blood was coming out. Once the daily output became low enough, I could get the God-forsaken drains removed.
Before I knew it, they asked Kevin to go and get the car and they came in with a wheelchair to escort me out. I did not feel ready to leave the hospital, but they obviously thought I was. So home we went.
The next few days are very cloudy to me and I do not really remember much of those days...luckily. I was on some pretty strong pain meds and muscle relaxers. Kevin turned out to be an amazing nurse and made sure that I took my medicine and that my drains were emptied on schedule. I believe I slept for the majority of the next 48 hours.
When I woke up 48 hours later I was able to take a shower and remove the bandages. Of course, I could not do any of this alone, I could barely lift my arms. Thankfully, Kevin was there to help. I was so nervous about removing the bandages, I had no idea what things were going to look like underneath. We gently removed the bandages and I looked in the mirror and wept. I had looked at a million pictures on-line of post-mastectomy pictures but nothing can prepare you for seeing yourself. I made it into the shower and sobbed the entire time that Kevin washed me. I was sobbing because of how I looked and I was sobbing because my husband was having to wash me and I could not even wash myself. This was a new low. Kevin was so kind; he was more kind than I ever deserved. The shower literally took everything out of me and I went straight back to bed. I wanted to sleep. I wanted this to all be a nightmare. I never wanted to see myself in the mirror again. For now, I would sleep.
Friday, April 4, 2014
August 27th and August 28th
The day before my mastectomy - August 27th
I am pretty sure I now know what soldiers feel like the night before they go to war or what an athlete feels like right before a championship game - I knew my fight and I was ready to fight it. I had researched every aspect of the surgery, I knew what to expect, I had prepared for the worst. At this point I had spent so much time worrying about the surgery, I was just ready to get it over. Like I said, waiting is the most cruel part of cancer, but my surgery day was almost here, the wait was almost over. I had organized all aspects that I could - my schedule, babysitters for Gabrielle for the next week, etc. I was ready for battle. The most amazing part of it all to me was that they were going to cut my breasts off but I only would have to stay at the hospital for one night - isn't that kind of scary? When I had Gabrielle, I had to stay for three nights. Birth seemed less extreme than a double mastectomy to me, maybe it wasn't?
I come from a big Cajun family. Our life revolves around family and food. We celebrate and mourn with food. The day before surgery my family gathered at my house with food and more food. It was like a funeral - maybe it was a funeral for my breasts. It was good to have company, it kept my mind off of things, and the desserts helped as well. At 3:00 pm, Kevin and I had to leave the mass at my house and head to the hospital for my injection for the sentinel node biopsy. I was a little apprehensive because they said they would have to do multiple injections into the breast to make sure the dye got to where it needed to go. The process went fairly smoothly and once the numbing agent was injected I really did not feel that much pain (or maybe I was just getting used to the pain of pricks and pokes). All in all, Kevin and I were back home within an hour. I could not hold Gab but for a few seconds that night because the dye was radioactive, it didn't stop me from kissing her cheeks about 1000 times that night though.
My family looked worried - especially my dad, mom and stepmom. Now that I am a parent I understand the worry. You never want to see your child suffer or have to go through pain. Even though I am an adult, I am still their child. My mom said 100 times "I wish it was me going through this again, you are too young." Cancer does not care about age - it takes its victims at any age.
The sun went down and I was faced with the night; I hated nights. How do you calm your mind when it knows that its body will be mutilated in the morning? How do you prepare yourself to see your breasts for the last time? How do you not question the decision to remove your breasts? Yes I had tried to mentally prepare for the surgery for weeks, but I am not sure you can ever mentally prepare for a mastectomy. When the night came, I realized I was not prepared. Luckily I had to be at the hospital for 5 am, so the night wouldn't last as long as most.
Day of Surgery
My alarm was set for 4:15 am. I had to shower with a special cleanser to remove all possible germs before heading to the hospital for 5:00 am. I did not have to set an alarm, I was already awake. This was the day, this was the day I had been waiting on for weeks. Strangely, a sense of calm came over me as I got into the shower. I had an action plan for the day, and I did well with plans. Kevin, my dad, and I left for the hospital right on schedule. My stepmom was going to stay with Gabrielle for the day. Fortunately, when Kevin and I decided to build a house last summer that was five minutes from Woman's Hospital, we had no idea how great of a decision that would be. I have spent more time at that hospital in the last year than I have anywhere else it seems, I feel lucky that I live so close to it.
We arrived at the hospital and the nurse was waiting for me. I did the normal routine - put on hospital gown and those crazy socks they give you with skid protection puff paint stuff on the bottom, gave a urine sample to make sure I was not pregnant and then the nurse started the IV. IVs suck, but what gets me through the pain of an IV is that you know the good stuff is coming to you from the IV - the pain medicine and the relaxers! And for that - I will take the IV. I don't have the greatest of veins so getting the IV in is never that fun, but eventually we got it in and they could start me on different drugs - antibiotics, pain medicine, fluids, anti-nausea medicine. I asked for the gambit.
By that time, my mom and aunt showed up along with my in-laws. Its hard to find appropriate small talk for right before a surgery, luckily my Aunt Kathy was there, and she can always find something to talk about! I love that woman. They did the talking, I did the listening. The plastic surgeon came in and asked everyone to step out to mark up my breasts so that the surgeon would know how much skin to leave so that an appropriate amount of skin would be left to insert the tissue expanders. It gave me comfort to know that my surgeon and plastic surgeon work together on surgeries like this all the time, so they knew what the other expected.
Everyone came back into the room and the nurse asked me if I wanted some medicine to help me relax. ARE YOU KIDDING ME?!?! Of course! I have been wanting that medicine for a month! I remember taking that medicine and not much else after that. I was OUT. I do not remember going into surgery, the surgery, or much else about that day. I vaguely remember waking up after surgery and asking if the nodes were clear and they said yes, and I went straight back to sleep.
I have later found out that I had visitors all day - none of which I remember. But thank you to all of those that came and visited and I am sorry I was not a great host!
August 28th ended without me knowing it - but I had survived the dreaded day! Tomorrow was a new day...
I am pretty sure I now know what soldiers feel like the night before they go to war or what an athlete feels like right before a championship game - I knew my fight and I was ready to fight it. I had researched every aspect of the surgery, I knew what to expect, I had prepared for the worst. At this point I had spent so much time worrying about the surgery, I was just ready to get it over. Like I said, waiting is the most cruel part of cancer, but my surgery day was almost here, the wait was almost over. I had organized all aspects that I could - my schedule, babysitters for Gabrielle for the next week, etc. I was ready for battle. The most amazing part of it all to me was that they were going to cut my breasts off but I only would have to stay at the hospital for one night - isn't that kind of scary? When I had Gabrielle, I had to stay for three nights. Birth seemed less extreme than a double mastectomy to me, maybe it wasn't?
I come from a big Cajun family. Our life revolves around family and food. We celebrate and mourn with food. The day before surgery my family gathered at my house with food and more food. It was like a funeral - maybe it was a funeral for my breasts. It was good to have company, it kept my mind off of things, and the desserts helped as well. At 3:00 pm, Kevin and I had to leave the mass at my house and head to the hospital for my injection for the sentinel node biopsy. I was a little apprehensive because they said they would have to do multiple injections into the breast to make sure the dye got to where it needed to go. The process went fairly smoothly and once the numbing agent was injected I really did not feel that much pain (or maybe I was just getting used to the pain of pricks and pokes). All in all, Kevin and I were back home within an hour. I could not hold Gab but for a few seconds that night because the dye was radioactive, it didn't stop me from kissing her cheeks about 1000 times that night though.
My family looked worried - especially my dad, mom and stepmom. Now that I am a parent I understand the worry. You never want to see your child suffer or have to go through pain. Even though I am an adult, I am still their child. My mom said 100 times "I wish it was me going through this again, you are too young." Cancer does not care about age - it takes its victims at any age.
The sun went down and I was faced with the night; I hated nights. How do you calm your mind when it knows that its body will be mutilated in the morning? How do you prepare yourself to see your breasts for the last time? How do you not question the decision to remove your breasts? Yes I had tried to mentally prepare for the surgery for weeks, but I am not sure you can ever mentally prepare for a mastectomy. When the night came, I realized I was not prepared. Luckily I had to be at the hospital for 5 am, so the night wouldn't last as long as most.
Day of Surgery
My alarm was set for 4:15 am. I had to shower with a special cleanser to remove all possible germs before heading to the hospital for 5:00 am. I did not have to set an alarm, I was already awake. This was the day, this was the day I had been waiting on for weeks. Strangely, a sense of calm came over me as I got into the shower. I had an action plan for the day, and I did well with plans. Kevin, my dad, and I left for the hospital right on schedule. My stepmom was going to stay with Gabrielle for the day. Fortunately, when Kevin and I decided to build a house last summer that was five minutes from Woman's Hospital, we had no idea how great of a decision that would be. I have spent more time at that hospital in the last year than I have anywhere else it seems, I feel lucky that I live so close to it.
We arrived at the hospital and the nurse was waiting for me. I did the normal routine - put on hospital gown and those crazy socks they give you with skid protection puff paint stuff on the bottom, gave a urine sample to make sure I was not pregnant and then the nurse started the IV. IVs suck, but what gets me through the pain of an IV is that you know the good stuff is coming to you from the IV - the pain medicine and the relaxers! And for that - I will take the IV. I don't have the greatest of veins so getting the IV in is never that fun, but eventually we got it in and they could start me on different drugs - antibiotics, pain medicine, fluids, anti-nausea medicine. I asked for the gambit.
By that time, my mom and aunt showed up along with my in-laws. Its hard to find appropriate small talk for right before a surgery, luckily my Aunt Kathy was there, and she can always find something to talk about! I love that woman. They did the talking, I did the listening. The plastic surgeon came in and asked everyone to step out to mark up my breasts so that the surgeon would know how much skin to leave so that an appropriate amount of skin would be left to insert the tissue expanders. It gave me comfort to know that my surgeon and plastic surgeon work together on surgeries like this all the time, so they knew what the other expected.
Everyone came back into the room and the nurse asked me if I wanted some medicine to help me relax. ARE YOU KIDDING ME?!?! Of course! I have been wanting that medicine for a month! I remember taking that medicine and not much else after that. I was OUT. I do not remember going into surgery, the surgery, or much else about that day. I vaguely remember waking up after surgery and asking if the nodes were clear and they said yes, and I went straight back to sleep.
I have later found out that I had visitors all day - none of which I remember. But thank you to all of those that came and visited and I am sorry I was not a great host!
August 28th ended without me knowing it - but I had survived the dreaded day! Tomorrow was a new day...
Thursday, April 3, 2014
Dr. Webster
To fertilize or not to fertilize?
The goal of meeting with Dr. Webster, the fertility specialist, was to understand what options we had in case we decided we wanted more kids in the future. I have to say, I already liked Dr. Webster before meeting him; he is partially responsible for my niece and nephew. Upon meeting him, I liked him even more.
He and I met in a conference room and he had the sweetest disposition and kind eyes. He was not only concerned about my future fertility but he was generally concerned about my health. He took his time and never rushed the meeting. He explained to me that science had made progress over the last few years, so they were no longer just freezing eggs, they were freezing fertilized embryos. Basically the process would consists of injecting me with hormones around the time of ovulation, tracking the eggs and at a very exact and precise time, fertilizing the egg and then freezing it. (that is a very basic and non-scientific way of explaining it, and I am not sure its exactly accurate). The embryo could later be implanted into me or into a surrogate - but it would be our child. The upside was that it was happening successfully all the time in others. The downside was that it was going to costs quite a bit of money, was not guaranteed to be successful for us down the road and in order to make sure they got the "egg" they needed I was going to have to be injected with high levels of hormones. My cancer is the type that feeds on hormones. So this was risky. Also, it was going to be a month long process - so either my surgery would have to be postponed or my chemo would have to be postponed - both were huge negatives for me. The quicker I could start treatment, the quicker I could finish the treatment.
Dr. Webster and I talked for almost an hour about the positives and negatives. He told me that Kevin and I really needed to think about things and talk about things before making a decision. He also said that I should consider myself lucky that I already had one child and that my health should probably come first at this point. He was one of the first doctors to look at me and say "I am sorry for the hand you have been dealt. Its not fair. You should not have to be making all these decisions at your age." It was touching to hear that from a doctor. He made me feel validated for all the feelings I had been feeling. That's the point in the appointment when I started to cry.
That evening, Kevin and I discussed the options and we both agreed that freezing an embryo was just not a good option for us. It was a hard discussion to have, especially for Kevin, he was having to give up his dream of future kids, especially that little boy he always dreamt of having. Nevertheless, we acknowledged just how lucky we were to have our Gab. She was always our love, but at this point we realized how truly blessed we were to have her, to get to be her parents.
That night was another one of those nights where I stayed up and watched Gab and Kevin sleep. I was lucky to have them. I did not deserve them, but I was so glad I had them. I cried and prayed "God let your will be done, but please let me live. I am not ready to die. Not yet."
That night I had no idea how my prayer "your will be done" would manifest itself. Kevin and I could make all the future plans we wanted to, but in the end, God makes the final plan. And boy did he have a plan...
The goal of meeting with Dr. Webster, the fertility specialist, was to understand what options we had in case we decided we wanted more kids in the future. I have to say, I already liked Dr. Webster before meeting him; he is partially responsible for my niece and nephew. Upon meeting him, I liked him even more.
He and I met in a conference room and he had the sweetest disposition and kind eyes. He was not only concerned about my future fertility but he was generally concerned about my health. He took his time and never rushed the meeting. He explained to me that science had made progress over the last few years, so they were no longer just freezing eggs, they were freezing fertilized embryos. Basically the process would consists of injecting me with hormones around the time of ovulation, tracking the eggs and at a very exact and precise time, fertilizing the egg and then freezing it. (that is a very basic and non-scientific way of explaining it, and I am not sure its exactly accurate). The embryo could later be implanted into me or into a surrogate - but it would be our child. The upside was that it was happening successfully all the time in others. The downside was that it was going to costs quite a bit of money, was not guaranteed to be successful for us down the road and in order to make sure they got the "egg" they needed I was going to have to be injected with high levels of hormones. My cancer is the type that feeds on hormones. So this was risky. Also, it was going to be a month long process - so either my surgery would have to be postponed or my chemo would have to be postponed - both were huge negatives for me. The quicker I could start treatment, the quicker I could finish the treatment.
Dr. Webster and I talked for almost an hour about the positives and negatives. He told me that Kevin and I really needed to think about things and talk about things before making a decision. He also said that I should consider myself lucky that I already had one child and that my health should probably come first at this point. He was one of the first doctors to look at me and say "I am sorry for the hand you have been dealt. Its not fair. You should not have to be making all these decisions at your age." It was touching to hear that from a doctor. He made me feel validated for all the feelings I had been feeling. That's the point in the appointment when I started to cry.
That evening, Kevin and I discussed the options and we both agreed that freezing an embryo was just not a good option for us. It was a hard discussion to have, especially for Kevin, he was having to give up his dream of future kids, especially that little boy he always dreamt of having. Nevertheless, we acknowledged just how lucky we were to have our Gab. She was always our love, but at this point we realized how truly blessed we were to have her, to get to be her parents.
That night was another one of those nights where I stayed up and watched Gab and Kevin sleep. I was lucky to have them. I did not deserve them, but I was so glad I had them. I cried and prayed "God let your will be done, but please let me live. I am not ready to die. Not yet."
That night I had no idea how my prayer "your will be done" would manifest itself. Kevin and I could make all the future plans we wanted to, but in the end, God makes the final plan. And boy did he have a plan...
August 2013
The weeks leading up to the double mastectomy
I would love to be able to say that the weeks leading up to my mastectomy that I did all kind of life changing, bucket list type of things BUT that would be lie. The truth of the matter is that I went into a pretty deep slump. I would get Gabrielle to school and then I would go home and get in bed. My days were spent crying, researching cancer things, looking at before and after pics of mastectomies on the internet and feeling sorry for myself. People that know me know that this is not my normal personality. But then again, I have never been faced with something so life altering in my life. My strong shake if off attitude was gone. The enemy that had invaded my body had now invaded my mind as well - and was winning. I would try to get out of bed and act "normal" when Kevin and Gabrielle would get home in the evenings, but normalcy was harder to fake than I had expected.
I became obsessed with researching breast cancer topics. I wanted to read something that I could relate to; unfortunately there was not a whole lot of personal stories from 29 year old breast cancer survivors (this is one reason I started this blog). I read books. I researched treatments. I researched wigs. I researched. For some reason, that was what made me feel like I had some kind of control. In actuality, I had no control and that killed me. My control freak personality (labeled by my husband) was spinning down a dark hole.
Pre-surgery consult with the oncologist
I saw my oncologist a week or two before my surgery and he confirmed what Dr. Christian had said - I would need chemotherapy after surgery. He would give my body a few weeks after surgery to heal and I would start chemotherapy on October 4th. My treatment would be every 2 weeks for a total of 6-8 treatments. Due to my age and oncotype score, he thought chemo was the best way to fight this so it would never come back. I found myself negotiating with him, trying to get him to see why I did not need chemo. Kevin and my Mother in law were both with me at the appointment and they agreed with the doctor - chemo was a must. Before leaving his office I had to schedule my first chemo treatment and schedule a class for Kevin and I to take to learn about chemo. It was real. I would be sick. I would lose my hair. BUT this was going to kill every cancer cell in my body - and I was willing to fight.
He also said that at the completion of chemo, I would start on tamoxifen and have to take it everyday for ten years. That meant I would be taking a hormone form of chemo until I was 40. Ten years seemed like an eternity. But I made myself think of Gab ten years from now - she will be 13. An age where she will need her mom more than ever. I want to be there for her. I want to be there when she starts high school, I want to meet her first boyfriend, I want to help her shop for her homecoming dresses, I want to bring her to get her make up (If her dad ever lets her wear it). I want to see my baby girl as a teenager. SO chemo and tamoxifen it will be.
Pre-surgery consult with surgeon
Three weeks before surgery I had a pre-surgery consult with Dr. Christian. My mother in law came with me because Kevin could not make that appointment. My mother in law was so amazing throughout this time. She rarely missed an appointment. She is the person you want with you at doctors' appointment. She is a very calm, level headed, rational person. She actually hears what the doctors are saying. I am so thankful for her. She was always there when I needed her and she always offered "rational" advice. After having three kids herself and a husband fighting cancer, she is strong to say the least.
Dr. Christian talked about what to expect during the surgery and after the surgery. I was not allowed to pick up Gabrielle for at least two weeks after the surgery, maybe even a month, that news killed me. My three year old would not understand why her mom could not pick her up and hold her or rock her. That part made me cry.
She also talked about how she was removing all the breast tissue, including the nipple. I did not have the option of a nipple sparing mastectomy - it was ALL coming off. She warned me about lymphedema and threatened me that I had to the physical therapy after the surgery or she would make me pay! Of course she was joking, but not really - she cares about her patients and will see to it that they do the right things. She also explained how I would be permanently numb in the chest area and underneath my arms. She doubted that I would ever get feeling back in those parts due to the loss of nerves - she was correct. Its a very bizarre feeling, I will explain more about that later.
She also informed me that she would be making an incision under my arm in order to get to the sentinel node. Basically the day before surgery, I would be injected with dye at the location of my cancer. At the time of my surgery, she would look for the node with the blue dye and remove that node in order to determine if the cancer had made its way into the lymph system. This would be a process that would happen during surgery. The node would be sent to a lab while I was under anesthesia and be tested for cancer. If it was clear, she could sew up that part and be done. If the cancer was in the sentinel node, she would have to keep removing nodes until she found a clear one. The hope and prayer was that it would not be in the sentinel node.
She then went to the topic of fertility. A topic that I had really not equated with cancer, but I guess it was time to talk and think about it. She told me that because my cancer was estrogen positive, I needed to get off of birth control ASAP. (This will be a conversation with a MAJOR impact - but you will have to stay tuned for that part). She went on to say that the chemotherapy followed by the tamoxifen would likely put me into menopause. She said that if Kevin and I wanted to have more kids, I needed to meet with Dr. Webster, a fertility specialist, ASAP to discuss our options. At this point, my head was spinning - 29 with no breasts and in menopause - that's not how anyone envisions their 20s and 30s.
Basically I felt like I was going to go from 29 to 65 in two months. That's hard to wrap your head around. I felt sorry for me, but I felt more sorry for Kevin. He did not sign up for this. He was thirty years old, he deserved a wife with breasts and nipples and estrogen and working ovaries and the ability to provide him more kids down the road. I mourned for me, but at this point I was mourning more for him. He was losing his wife as he knew her.
Cancer sucks, not just for those that have it, bur for those that love those that have it.
As for future kids, I was quite content with having one child. I always felt like Gabrielle was a blessing and I never took her little life for granted. I always felt extremely lucky to get to be her mom; some people never get the chance to be a mother. Honestly though, I did not have a desire for more kids. However, I knew Kevin wanted more kids down the road. Amazingly, once someone takes the option of more kids off the table you start to wonder if maybe sometime in the future, the maternity instinct would kick in again and I would yearn for another baby. Even though I did not think I wanted any more kids, I liked having that option for the future. Dr. Christian was basically telling me that that option was soon going to be gone.
So I left her office with the details of the surgery swirling in my mind along with the news that in two months my fertility was going to be out the window. Kevin and I talked about it and we decided it would be a good idea to at least meet with Dr. Webster and see what our fertility options were. So an appointment was scheduled. I also stopped taking birth control that day.
God works in mysterious ways...
I would love to be able to say that the weeks leading up to my mastectomy that I did all kind of life changing, bucket list type of things BUT that would be lie. The truth of the matter is that I went into a pretty deep slump. I would get Gabrielle to school and then I would go home and get in bed. My days were spent crying, researching cancer things, looking at before and after pics of mastectomies on the internet and feeling sorry for myself. People that know me know that this is not my normal personality. But then again, I have never been faced with something so life altering in my life. My strong shake if off attitude was gone. The enemy that had invaded my body had now invaded my mind as well - and was winning. I would try to get out of bed and act "normal" when Kevin and Gabrielle would get home in the evenings, but normalcy was harder to fake than I had expected.
I became obsessed with researching breast cancer topics. I wanted to read something that I could relate to; unfortunately there was not a whole lot of personal stories from 29 year old breast cancer survivors (this is one reason I started this blog). I read books. I researched treatments. I researched wigs. I researched. For some reason, that was what made me feel like I had some kind of control. In actuality, I had no control and that killed me. My control freak personality (labeled by my husband) was spinning down a dark hole.
Pre-surgery consult with the oncologist
I saw my oncologist a week or two before my surgery and he confirmed what Dr. Christian had said - I would need chemotherapy after surgery. He would give my body a few weeks after surgery to heal and I would start chemotherapy on October 4th. My treatment would be every 2 weeks for a total of 6-8 treatments. Due to my age and oncotype score, he thought chemo was the best way to fight this so it would never come back. I found myself negotiating with him, trying to get him to see why I did not need chemo. Kevin and my Mother in law were both with me at the appointment and they agreed with the doctor - chemo was a must. Before leaving his office I had to schedule my first chemo treatment and schedule a class for Kevin and I to take to learn about chemo. It was real. I would be sick. I would lose my hair. BUT this was going to kill every cancer cell in my body - and I was willing to fight.
He also said that at the completion of chemo, I would start on tamoxifen and have to take it everyday for ten years. That meant I would be taking a hormone form of chemo until I was 40. Ten years seemed like an eternity. But I made myself think of Gab ten years from now - she will be 13. An age where she will need her mom more than ever. I want to be there for her. I want to be there when she starts high school, I want to meet her first boyfriend, I want to help her shop for her homecoming dresses, I want to bring her to get her make up (If her dad ever lets her wear it). I want to see my baby girl as a teenager. SO chemo and tamoxifen it will be.
Pre-surgery consult with surgeon
Three weeks before surgery I had a pre-surgery consult with Dr. Christian. My mother in law came with me because Kevin could not make that appointment. My mother in law was so amazing throughout this time. She rarely missed an appointment. She is the person you want with you at doctors' appointment. She is a very calm, level headed, rational person. She actually hears what the doctors are saying. I am so thankful for her. She was always there when I needed her and she always offered "rational" advice. After having three kids herself and a husband fighting cancer, she is strong to say the least.
Dr. Christian talked about what to expect during the surgery and after the surgery. I was not allowed to pick up Gabrielle for at least two weeks after the surgery, maybe even a month, that news killed me. My three year old would not understand why her mom could not pick her up and hold her or rock her. That part made me cry.
She also talked about how she was removing all the breast tissue, including the nipple. I did not have the option of a nipple sparing mastectomy - it was ALL coming off. She warned me about lymphedema and threatened me that I had to the physical therapy after the surgery or she would make me pay! Of course she was joking, but not really - she cares about her patients and will see to it that they do the right things. She also explained how I would be permanently numb in the chest area and underneath my arms. She doubted that I would ever get feeling back in those parts due to the loss of nerves - she was correct. Its a very bizarre feeling, I will explain more about that later.
She also informed me that she would be making an incision under my arm in order to get to the sentinel node. Basically the day before surgery, I would be injected with dye at the location of my cancer. At the time of my surgery, she would look for the node with the blue dye and remove that node in order to determine if the cancer had made its way into the lymph system. This would be a process that would happen during surgery. The node would be sent to a lab while I was under anesthesia and be tested for cancer. If it was clear, she could sew up that part and be done. If the cancer was in the sentinel node, she would have to keep removing nodes until she found a clear one. The hope and prayer was that it would not be in the sentinel node.
She then went to the topic of fertility. A topic that I had really not equated with cancer, but I guess it was time to talk and think about it. She told me that because my cancer was estrogen positive, I needed to get off of birth control ASAP. (This will be a conversation with a MAJOR impact - but you will have to stay tuned for that part). She went on to say that the chemotherapy followed by the tamoxifen would likely put me into menopause. She said that if Kevin and I wanted to have more kids, I needed to meet with Dr. Webster, a fertility specialist, ASAP to discuss our options. At this point, my head was spinning - 29 with no breasts and in menopause - that's not how anyone envisions their 20s and 30s.
Basically I felt like I was going to go from 29 to 65 in two months. That's hard to wrap your head around. I felt sorry for me, but I felt more sorry for Kevin. He did not sign up for this. He was thirty years old, he deserved a wife with breasts and nipples and estrogen and working ovaries and the ability to provide him more kids down the road. I mourned for me, but at this point I was mourning more for him. He was losing his wife as he knew her.
Cancer sucks, not just for those that have it, bur for those that love those that have it.
As for future kids, I was quite content with having one child. I always felt like Gabrielle was a blessing and I never took her little life for granted. I always felt extremely lucky to get to be her mom; some people never get the chance to be a mother. Honestly though, I did not have a desire for more kids. However, I knew Kevin wanted more kids down the road. Amazingly, once someone takes the option of more kids off the table you start to wonder if maybe sometime in the future, the maternity instinct would kick in again and I would yearn for another baby. Even though I did not think I wanted any more kids, I liked having that option for the future. Dr. Christian was basically telling me that that option was soon going to be gone.
So I left her office with the details of the surgery swirling in my mind along with the news that in two months my fertility was going to be out the window. Kevin and I talked about it and we decided it would be a good idea to at least meet with Dr. Webster and see what our fertility options were. So an appointment was scheduled. I also stopped taking birth control that day.
God works in mysterious ways...
Wednesday, April 2, 2014
August 2013
The month of tests and waiting
August became the month of test, pokes, pricks, doctors, exams, and more waiting. I saw one doctor after another, one specialist after another, and had one test after another. All the doctors agreed that it was best to wait on the BRCA results before making a treatment plan.
The silver lining about having breast cancer at 29 is that it gets doctors' attention. In fact, two separate breasts panels met regarding my case specifically. Its pretty humbling to imagine a large group of doctors sitting around talking about my cancer specifically and deciding on a treatment plan. Every new doctor I saw already knew my case before I walked in the door - the radiation oncologist, the surgeon and the oncologist.
At this point we had the following information regarding my cancer - it was Estrogen positive, Progesterone negative, Grade 2, HER-2 negative. The ultrasound showed it measuring quite big but the MRI showed it looking smaller than the ultrasound. Nevertheless, all the doctors agreed that I had "troublesome breasts." Meaning, due the density and consistency of my breasts, it was hard for them to decipher what was cancer, what was suspicious and what was normal tissue.
I met with a breast surgeon to get a second opinion and he was the first one to straight up tell me that his opinion was a double mastectomy followed by chemo. His words still haunt me to this day, "You need chemo even if you remove both breasts, it only takes one cell to be missed during surgery for your cancer to spread." I have lived with the horror of those words since they were spoken. He said he recommended a double mastectomy regardless of the BRCA results due to my family history and the consistency of my breasts. He said that I would probably be doing biopsies every 6 months if I did not remove the breasts because it was just so hard to read my breasts from mammograms and ultrasounds. He made very valid points - points I did not want to hear but points I knew were true. So I left that appointment with the inclination that I would probably be losing both my breasts.
Exactly ten days after doing the blood work for the BRCA test, Dr. Christian called me with the results. She said the good news was this was the fastest turnaround she had ever seen for results, the bad news was that the results were positive. (As a sidenote, my mom, who has fought cancer twice is not a carrier, so I really did not think that I would be a carrier. More on the genetic side to this later). so this was BAD news, but at least we could make a plan. Dr. Christian said she had already spoken to my other doctors and they all agreed that I should get a double mastectomy. Basically, the decision had been made for me, for which I was so relieved. It was what I had prayed for, I wanted the doctors to tell me exactly what I should do, I did not want to have to make the decision. Seriously, how could a 29 year old make the decision to have her breasts removed?? I am still glad the doctors made the decision for me.
So the next step was to meet with a plastic surgeon and decide what route to take for reconstruction. I told Dr. Christian I wanted the surgery ASAP and that I wanted the cancer out of me ASAP. Luckily my mom made a call to her plastic surgeon and they squeezed me in that same week. Truth be known, I always kind of wanted fake boobs - but this isn't how I had envisioned getting them...
So I met with the plastic surgeon and he said that the best results would come from a two step reconstruction process. The first step being tissue expanders at the time of the mastectomy and then months of expansion and then implants placed after the muscles and skin had time to fully expand. That became my reconstruction plan. I asked to look at pictures of prior patients to get a feel for what to expect. BAD IDEA. I left crying. My body was going to be mutilated. I would never look the same. I needed to come to terms with that. I am still coming to terms with that. I have come to learn that with breast augmentation, they have a lot more to work with; most of the time you get a "better you." The goal with breast reconstruction is to make it look "as normal as possible." You do not get a better than normal outcome, you just hope to not look mutilated forever.
The waiting game started again, this time it was a wait for my breast surgeon and plastic surgeon to coordinate schedules (they actually do a lot of surgeries together) and to get a surgery room at that time. Basically this became a logistical nightmare. But after an eternity of waiting, I got a surgery date - August 28, 2013 - almost a month after my diagnosis.
In the meantime, before making a call as to chemotherapy, my oncologist wanted to run one more test. The test is called an oncotype test. Basically its a test that examines a breast cancer patient's tumor tissue at a molecular level, and gives information about a patient's individual disease. http://www.genomichealth.com/en-US/OncotypeDX.aspx#.UzwpRU0o_IU. The Oncotype DX breast cancer test is the only multigene expression test commercially available that has clinical evidence validating its ability to predict the likelihood of chemotherapy benefit as well as recurrence in early-stage breast cancer. You want a low score - the lower the better. The oncologist said that after he saw these results, he could make a better decision as to chemo. Since I was having a double mastectomy, there was no need for radiation.
I was not really expecting the oncotype results before surgery. However, while grocery shopping one day, my phone rang and it was Dr. Christian. Her and I seemed to talk frequently these days, she is the most caring doctor in the world. Everyone else in the store was probably thinking about what to cook for dinner, but when I got that call, dinner was the last thing on my mind. She said that she had just got off the phone with my oncologist and that they had received my oncotype results that day and they both agreed that I needed chemo. My score was at a level that showed that my recurrence was likely and I needed chemo to decrease my chances of recurrence. She went on to say that she would like to put in the chemo port at the time of mastectomy so that it would be one less surgery I would need down the road. At this point, I was not even sure what a chemo port was, but if Dr. Christian said this was the best thing to do, it was the best thing to do. So I learned in a grocery store that I would be having chemo.
I wanted to cry. I wanted to yell. Why couldn't getting my breasts chopped off be enough? Why did I have to have chemo? I did not want to be sick, I wanted to raise my daughter. I didn't want to miss dance lessons and field trips due to nausea and chemo. I did not want to lose my hair. But this is what the doctors thought was best, and I had promised myself that I would fight this cancer exactly the way the doctors thought best. I wanted to see Gabrielle grow up. I got in the car and called Kevin with the news. I tried to remain strong and act like chemo did not scare the hell out of me, but it did.
So it became a waiting game until August 28th, I waited and waited...
August became the month of test, pokes, pricks, doctors, exams, and more waiting. I saw one doctor after another, one specialist after another, and had one test after another. All the doctors agreed that it was best to wait on the BRCA results before making a treatment plan.
The silver lining about having breast cancer at 29 is that it gets doctors' attention. In fact, two separate breasts panels met regarding my case specifically. Its pretty humbling to imagine a large group of doctors sitting around talking about my cancer specifically and deciding on a treatment plan. Every new doctor I saw already knew my case before I walked in the door - the radiation oncologist, the surgeon and the oncologist.
At this point we had the following information regarding my cancer - it was Estrogen positive, Progesterone negative, Grade 2, HER-2 negative. The ultrasound showed it measuring quite big but the MRI showed it looking smaller than the ultrasound. Nevertheless, all the doctors agreed that I had "troublesome breasts." Meaning, due the density and consistency of my breasts, it was hard for them to decipher what was cancer, what was suspicious and what was normal tissue.
I met with a breast surgeon to get a second opinion and he was the first one to straight up tell me that his opinion was a double mastectomy followed by chemo. His words still haunt me to this day, "You need chemo even if you remove both breasts, it only takes one cell to be missed during surgery for your cancer to spread." I have lived with the horror of those words since they were spoken. He said he recommended a double mastectomy regardless of the BRCA results due to my family history and the consistency of my breasts. He said that I would probably be doing biopsies every 6 months if I did not remove the breasts because it was just so hard to read my breasts from mammograms and ultrasounds. He made very valid points - points I did not want to hear but points I knew were true. So I left that appointment with the inclination that I would probably be losing both my breasts.
Exactly ten days after doing the blood work for the BRCA test, Dr. Christian called me with the results. She said the good news was this was the fastest turnaround she had ever seen for results, the bad news was that the results were positive. (As a sidenote, my mom, who has fought cancer twice is not a carrier, so I really did not think that I would be a carrier. More on the genetic side to this later). so this was BAD news, but at least we could make a plan. Dr. Christian said she had already spoken to my other doctors and they all agreed that I should get a double mastectomy. Basically, the decision had been made for me, for which I was so relieved. It was what I had prayed for, I wanted the doctors to tell me exactly what I should do, I did not want to have to make the decision. Seriously, how could a 29 year old make the decision to have her breasts removed?? I am still glad the doctors made the decision for me.
So the next step was to meet with a plastic surgeon and decide what route to take for reconstruction. I told Dr. Christian I wanted the surgery ASAP and that I wanted the cancer out of me ASAP. Luckily my mom made a call to her plastic surgeon and they squeezed me in that same week. Truth be known, I always kind of wanted fake boobs - but this isn't how I had envisioned getting them...
So I met with the plastic surgeon and he said that the best results would come from a two step reconstruction process. The first step being tissue expanders at the time of the mastectomy and then months of expansion and then implants placed after the muscles and skin had time to fully expand. That became my reconstruction plan. I asked to look at pictures of prior patients to get a feel for what to expect. BAD IDEA. I left crying. My body was going to be mutilated. I would never look the same. I needed to come to terms with that. I am still coming to terms with that. I have come to learn that with breast augmentation, they have a lot more to work with; most of the time you get a "better you." The goal with breast reconstruction is to make it look "as normal as possible." You do not get a better than normal outcome, you just hope to not look mutilated forever.
The waiting game started again, this time it was a wait for my breast surgeon and plastic surgeon to coordinate schedules (they actually do a lot of surgeries together) and to get a surgery room at that time. Basically this became a logistical nightmare. But after an eternity of waiting, I got a surgery date - August 28, 2013 - almost a month after my diagnosis.
In the meantime, before making a call as to chemotherapy, my oncologist wanted to run one more test. The test is called an oncotype test. Basically its a test that examines a breast cancer patient's tumor tissue at a molecular level, and gives information about a patient's individual disease. http://www.genomichealth.com/en-US/OncotypeDX.aspx#.UzwpRU0o_IU. The Oncotype DX breast cancer test is the only multigene expression test commercially available that has clinical evidence validating its ability to predict the likelihood of chemotherapy benefit as well as recurrence in early-stage breast cancer. You want a low score - the lower the better. The oncologist said that after he saw these results, he could make a better decision as to chemo. Since I was having a double mastectomy, there was no need for radiation.
I was not really expecting the oncotype results before surgery. However, while grocery shopping one day, my phone rang and it was Dr. Christian. Her and I seemed to talk frequently these days, she is the most caring doctor in the world. Everyone else in the store was probably thinking about what to cook for dinner, but when I got that call, dinner was the last thing on my mind. She said that she had just got off the phone with my oncologist and that they had received my oncotype results that day and they both agreed that I needed chemo. My score was at a level that showed that my recurrence was likely and I needed chemo to decrease my chances of recurrence. She went on to say that she would like to put in the chemo port at the time of mastectomy so that it would be one less surgery I would need down the road. At this point, I was not even sure what a chemo port was, but if Dr. Christian said this was the best thing to do, it was the best thing to do. So I learned in a grocery store that I would be having chemo.
I wanted to cry. I wanted to yell. Why couldn't getting my breasts chopped off be enough? Why did I have to have chemo? I did not want to be sick, I wanted to raise my daughter. I didn't want to miss dance lessons and field trips due to nausea and chemo. I did not want to lose my hair. But this is what the doctors thought was best, and I had promised myself that I would fight this cancer exactly the way the doctors thought best. I wanted to see Gabrielle grow up. I got in the car and called Kevin with the news. I tried to remain strong and act like chemo did not scare the hell out of me, but it did.
So it became a waiting game until August 28th, I waited and waited...
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