Its taken me a while to get to writing this. Mostly because life got in the way. I am just days away from my prophylactic mastectomy....and I got diagnosed with breast cancer. Bummer, to say the least. The moment my surgeon called me with my biopsy results, I felt my knees buckle. It was the single most surreal moment to date. I have sometimes imagined what it would be like to receive truly awful news. The realness of what it feels like. The knowing that it isn't a joke or a dream and there isn't a damned thing that you can do to alter the course. My first thought after hearing the news was, "I do not want to leave my kids without a mother."
This new addition to my journey doesn't really change anything for the moment. Surgery will continue as planned, except with the addition of a sentinel node biopsy. My cancer came back estrogen receptor positive...which was another surprise for me, as most BRCA1-related cancers are triple negative (If this is confusing to you, Google it, because I don't feel like explaining it all right now). The bottom line is that I had to come off my estrogen. And I can never go back on it. The up-side is that ER+ cancers apparently have a better prognosis. I am banking on that right now.
The days after getting my diagnosis, I think I went through every single emotion known to mankind (and probably a few that I created myself). I became really angry. I felt my body had betrayed me. I mean, I did everything right....I followed a good diet, got lots of exercise, went to regular check-ups...and when I found I carried the mutation, I jumped through all the hoops of getting the surgeries I needed. BUT I STILL GOT EFFING CANCER! I mean, what the hell???!!!
Then I got really grateful. I realized that had I never gotten tested, I would probably not have gotten my first real mammogram until sometime next year. I would have continued breastfeeding Anthony, and all the while, this tumor would have continued to grow. I am sure I would have caught it sooner or later, but still. I wouldn't have caught it NOW. And now is super-important. We are hopeful that this cancer is in its earliest stages...mostly DCIS (which in a regular population might not even be considered cancer). But I am not the regular population. My cancer had started to leave the confines of the ducts...something called micro-invasion. Not quite invasive, but heading in that direction. It remains to be seen the full extent of the cancer. The final pathology report from the tissue submitted after my mastectomy and the sentinel node biopsy, will for the most part, dictate any further treatment I will need. Chemo may be in my future. But I don't know to what extent my BRCA1 status will play into how this is dealt with. And there is also my family history and my age. I have the honorable distinction of being the youngest woman diagnosed with breast cancer in my family. Yay, me!
This has all brought up some crazy feelings and thoughts. Sometimes they come to me while I am walking around or doing the laundry, and I think to myself, "I should write that down." But as I sit at the computer now, they all escape me. Right now, its the not knowing that is killing me. All I can do is research as much as I can and wait. Wait for someone to tell me that I am going to be just fine, or that I am going to need a whole lot more than I signed up for. I also wish that I could find a way to navigate through these menopause symptoms. Estrogen is out. And sadly, there isn't a whole lot of other options...low-dose anti-depressants? Well that's just....depressing. Times like this make it abundantly clear how little we as a society care about the health of women. I mean, why are we here at this point where my only option for prevention (at least one that was comfortable to me) was to lop off body parts? And what did that do for me? Not a whole lot. I feel like I am in a maze, and just when I think I have things sorted out, I find that I have gone down a wrong passageway and ended up at a brick wall. Don't get me wrong, I am incredibly grateful for all the wonderful care I have received. And progress has been made. In the 15 years since my mother had cancer, so much has improved. Just one look at her pathology report compared to mine can show you that. But I still feel a little bit miffed I find it ironic that just as I am being diagnosed at age 41, the new recommendations for starting mammograms is 45. Granted that is without a family history or genetic mutation...but I find myself asking, "what about all the women in their 20's and 30's with NO family history that get diagnosed? What about the people who don't know their family histories? What about all the people that carry a mutation, but don't know? What about the mutations that we haven't yet identified? The breast cancer forums I am part of have lit up with anger at these new recommendations. I have seen more than one response that reads like, "Under the new screening recommendations, I would be dead."
So, that's it for now. I am where I am. My mother arrives in a few short hours, and all will be right in the world. She is a rock. She can get me through anything. I may have inherited this mutation from her, but I have inherited so much more from her...strength, the ability to persevere, and a willingness to fight. She said something to me after I called her to tell her my diagnosis. She said, "I wish I could go through this for you, but I can't. So instead, I will go through it WITH you." I love her so much!!!
Thursday, October 22, 2015
Thursday, August 6, 2015
More results...
So part of this BRCA journey has been about researching my family. We know I inherited my mutation from either my mother or father. My mother seemed the most-likely source, but my father's side is not without suspicion as well. On the same day that I had my BSO, my mother had genetic testing done. Yesterday we got the results, confirming that I did indeed inherit my mutation from her, as she also carries the same mutation. Since we knew it had to come from either parent, no news was going to be welcome. If it hadn't been my mom, that meant it would be my dad. All this does is give us more information...and who we should share it with.
My mother is a strong, strong woman. She kicked breast cancer in the butt 15 years ago. She never once complained. This isn't to say that she didn't struggle. I am sure that she had her moments both physically and mentally. But she carried on. What else can one do? So she received the news of her mutation in stride. We joked on the phone. I cried, "We're mutants!" She laughed. I told her that I wish with our mutation we had also acquired some super powers like the X-Men. She laughed again. She is actually a bit of a worrier. More so for the people she loves than for herself. She is fierce in her motherly love for her children. I know that she would do anything to protect my brother and me...even as we are both grown adults in our 40's. I am glad that she is taking the time to seek out the information from specialists and not jumping into anything. She is 15 years NED! That's huge. Most of the statistics we can find on recurrence go out 5-10years. She's kind of blown all that out of the water. So she sent her results to her siblings and cousins...and we go from here.
The one thing that came out of her results that I didn't expect, was that I became acutely aware of the fact that my own children carry a 50% chance of having this mutation as well. I knew that before, but somehow, it became more real for me. After dinner, I watched my two kids playing on the living room floor. My daughter, from all appearances and behavior seems to have soaked up more of my DNA than her brother. I worry for her. I worry for my son as well. I guess I am like my mom.
In closing, I do have to say that I owe my life to my mother. She may have unknowingly passed on this mutation, but she gave me so much amazing stuff as well. She nurtured me, supported me, cheered me on. She has been there for me through thick and thin. We have had our ups and downs through the years, but one thing has always been constant. I have never once in my life questioned her love for me. And in some ways, she has saved my life. Her cancer, her fight...it brought everything into my radar. Because of that I got tested and am taking steps to decrease my risk. She is remarkable. And I love her more than anything.
My mother is a strong, strong woman. She kicked breast cancer in the butt 15 years ago. She never once complained. This isn't to say that she didn't struggle. I am sure that she had her moments both physically and mentally. But she carried on. What else can one do? So she received the news of her mutation in stride. We joked on the phone. I cried, "We're mutants!" She laughed. I told her that I wish with our mutation we had also acquired some super powers like the X-Men. She laughed again. She is actually a bit of a worrier. More so for the people she loves than for herself. She is fierce in her motherly love for her children. I know that she would do anything to protect my brother and me...even as we are both grown adults in our 40's. I am glad that she is taking the time to seek out the information from specialists and not jumping into anything. She is 15 years NED! That's huge. Most of the statistics we can find on recurrence go out 5-10years. She's kind of blown all that out of the water. So she sent her results to her siblings and cousins...and we go from here.
The one thing that came out of her results that I didn't expect, was that I became acutely aware of the fact that my own children carry a 50% chance of having this mutation as well. I knew that before, but somehow, it became more real for me. After dinner, I watched my two kids playing on the living room floor. My daughter, from all appearances and behavior seems to have soaked up more of my DNA than her brother. I worry for her. I worry for my son as well. I guess I am like my mom.
In closing, I do have to say that I owe my life to my mother. She may have unknowingly passed on this mutation, but she gave me so much amazing stuff as well. She nurtured me, supported me, cheered me on. She has been there for me through thick and thin. We have had our ups and downs through the years, but one thing has always been constant. I have never once in my life questioned her love for me. And in some ways, she has saved my life. Her cancer, her fight...it brought everything into my radar. Because of that I got tested and am taking steps to decrease my risk. She is remarkable. And I love her more than anything.
Tuesday, July 14, 2015
3 weeks out
Its been 3 weeks today since my BSO. For the most part, I can say its been uneventful. I do have moments of feel kind of something...but I think that's to be expected. I get hot flashes. They aren't awful, but I do notice them. I have also been bleeding since surgery, but that's mostly from the progesterone in the IUD that was placed. I'm hoping that ends soon because its really annoying. The one perk of all this crap was that I wasn't going to have a period anymore. I'm not taking estrogen so....can we be done already?
I also have moments of fear that wake me up and keep me up. The other night, it was the fear that I have breast cancer. I'm still waiting until September to have my MRI...and I got myself convinced that they are going to find something. I don't want to have to go through chemo and radiation on top of my mastectomy come October. Sometimes I wake up feeling like something else is going to happen. Sometimes I wake up because I feel really hot and have to kick off all the sheets and tear off my clothes. Sometimes I just lay awake thinking about all the women out there that are going through this and worse. And I worry about complications with the mastectomy. There is just so damned much to worry about. People tell me not to worry...which is kind of ridiculous if you think about it. I've been handed all this crap to deal with and then someone flippantly says, "Eh, just don't worry about it." Okay, sure. Why didn't I think of that? I mean, shit, don't you think if I could stop worrying about it, I would?
Sometimes I think I should see a therapist. Maybe that would help sort out all the shit that's swirling around in my head and consuming just a little too much of my time (I still have to be a mother, wife and go to work). And then sometimes I think that I really can't spare one more second of my time attending more appointments. So that's where I am at. This whole BRCA mutation has a tendency to completely overwhelm your life. I think about boobs and foobs pretty much all day long. I think about the side effects of early menopause. I read every damned study that crosses before me. And I am tired of it. I want to go back to my "carefree" life. But that's joke too. Is there any such thing as a carefree life? Nope. Because if I weren't worrying about this, I'd be worrying about some other damned thing.
We are awaiting the results of my mother's testing. I'm feeling all sorts of anxious. Not because her results will change anything for me. I am anxious for her. If she has the mutation...this could mean a whole bunch of crap for her. For her sisters. For my cousins. And if she is negative, I worry about my dad. Anxious for him. Because even though there is no way anyone could have known, I know he's going to feel guilty. And telling him to not feel guilty is just as stupid as people telling me not to worry. Its just going to happen. I know I am going to feel the same way when my kids are old enough to chose testing for themselves. I just pray that if they have the mutation, there will be more options available to them than lopping off body parts.
So I wait. Wait for an MRI, wait to have a colonoscopy, wait for my mother's results, wait for my mastectomy and reconstruction. And I try really damned hard not to worry. But I am going to worry. I just am. There is no way around that. Just like there is no way around this mutation.
I also have moments of fear that wake me up and keep me up. The other night, it was the fear that I have breast cancer. I'm still waiting until September to have my MRI...and I got myself convinced that they are going to find something. I don't want to have to go through chemo and radiation on top of my mastectomy come October. Sometimes I wake up feeling like something else is going to happen. Sometimes I wake up because I feel really hot and have to kick off all the sheets and tear off my clothes. Sometimes I just lay awake thinking about all the women out there that are going through this and worse. And I worry about complications with the mastectomy. There is just so damned much to worry about. People tell me not to worry...which is kind of ridiculous if you think about it. I've been handed all this crap to deal with and then someone flippantly says, "Eh, just don't worry about it." Okay, sure. Why didn't I think of that? I mean, shit, don't you think if I could stop worrying about it, I would?
Sometimes I think I should see a therapist. Maybe that would help sort out all the shit that's swirling around in my head and consuming just a little too much of my time (I still have to be a mother, wife and go to work). And then sometimes I think that I really can't spare one more second of my time attending more appointments. So that's where I am at. This whole BRCA mutation has a tendency to completely overwhelm your life. I think about boobs and foobs pretty much all day long. I think about the side effects of early menopause. I read every damned study that crosses before me. And I am tired of it. I want to go back to my "carefree" life. But that's joke too. Is there any such thing as a carefree life? Nope. Because if I weren't worrying about this, I'd be worrying about some other damned thing.
We are awaiting the results of my mother's testing. I'm feeling all sorts of anxious. Not because her results will change anything for me. I am anxious for her. If she has the mutation...this could mean a whole bunch of crap for her. For her sisters. For my cousins. And if she is negative, I worry about my dad. Anxious for him. Because even though there is no way anyone could have known, I know he's going to feel guilty. And telling him to not feel guilty is just as stupid as people telling me not to worry. Its just going to happen. I know I am going to feel the same way when my kids are old enough to chose testing for themselves. I just pray that if they have the mutation, there will be more options available to them than lopping off body parts.
So I wait. Wait for an MRI, wait to have a colonoscopy, wait for my mother's results, wait for my mastectomy and reconstruction. And I try really damned hard not to worry. But I am going to worry. I just am. There is no way around that. Just like there is no way around this mutation.
Thursday, June 25, 2015
Pathology report says....
You know that dance that Snoopy does when he is really happy? The one where he sticks his nose in the air and his little feet get going? Well, that's the dance I am doing today (except maybe a little slower because I am a little bloated and sore). I got my final pathology report back from my BSO and its all clear! No malignancy! This is the best possible news. Getting this news just lifted a weight off me that I didn't realize was there. NO MALIGNANCY. This means that my prophylactic surgery was a success. I got those dang tubes and ovaries out before they had the chance to try and kill me! I want to celebrate! I am just SO HAPPY.
I feel like this whole journey is partly over (and it is). I know I have more big surgery in my future, but for now I am going to relish in this success and take the time to heal. My abdomen is still sore and I look like I am about 6 months pregnant. (Note to self: Now is not the time to go bathing suit shopping). My throat is still a little sore. I am not as tired as I was yesterday, so that's a plus. I walked down to my coffee shop this morning and had a nice quiet peaceful coffee. The weather is amazing. I feel strong. I am anxious to get back to playing with my kids (no lifting for a while, so.....). I am just feeling so thankful. Thankful for having the information about my BRCA status (never thought I would say that). Thankful to be cared for by such an amazing medical team. Thankful to have such supportive friends and family. There is so much to celebrate today.
I feel like this whole journey is partly over (and it is). I know I have more big surgery in my future, but for now I am going to relish in this success and take the time to heal. My abdomen is still sore and I look like I am about 6 months pregnant. (Note to self: Now is not the time to go bathing suit shopping). My throat is still a little sore. I am not as tired as I was yesterday, so that's a plus. I walked down to my coffee shop this morning and had a nice quiet peaceful coffee. The weather is amazing. I feel strong. I am anxious to get back to playing with my kids (no lifting for a while, so.....). I am just feeling so thankful. Thankful for having the information about my BRCA status (never thought I would say that). Thankful to be cared for by such an amazing medical team. Thankful to have such supportive friends and family. There is so much to celebrate today.
Wednesday, June 24, 2015
BSO done!
Post-BSO!
First prophylactic surgery done! Went in yesterday and had my BSO and Mirena IUD placed. Feeling GREAT today. Minimally sore. Only had to take percocet last night. This morning, took some ibuprofen, and feel mostly good. Abdomen is a little sore and minimal bloating. The referred left shoulder pain is mostly gone (comes and goes when I am standing up). I took my dressings off and incisions look great. So far, no menopause symptoms (although they are likely to show up over the next couple days if they are going to).
I do feel a certain amount of relief knowing that a giant part of my risk is greatly reduced. I have to await the final pathology report in a couple days, but mostly I feel incredibly grateful right now. I was cared for by an amazing team. My doctor, Hope Frisch, I can't say enough good things about. She is incredibly skilled and caring. She took all the time I needed to get questions answered. She makes me feel like I am in the best hands. I woke up and my husband was by my side. I came home yesterday and kissed my sweet babies. I was surrounded by my husband, sister-in-law and mother-in-law. I got to talk to my parents on the phone. I got many texts from concerned friends. My children's babysitter sent a wonderful dinner for us. And I slept. A lot.
So today, I feel like a big part of this journey is behind me. I want anyone out there that is facing this same risk to know...its okay. Its okay to be terrified. But in the end, after its done, the relief is amazing.
To ALL of you, go out today and do something great!
First prophylactic surgery done! Went in yesterday and had my BSO and Mirena IUD placed. Feeling GREAT today. Minimally sore. Only had to take percocet last night. This morning, took some ibuprofen, and feel mostly good. Abdomen is a little sore and minimal bloating. The referred left shoulder pain is mostly gone (comes and goes when I am standing up). I took my dressings off and incisions look great. So far, no menopause symptoms (although they are likely to show up over the next couple days if they are going to).
I do feel a certain amount of relief knowing that a giant part of my risk is greatly reduced. I have to await the final pathology report in a couple days, but mostly I feel incredibly grateful right now. I was cared for by an amazing team. My doctor, Hope Frisch, I can't say enough good things about. She is incredibly skilled and caring. She took all the time I needed to get questions answered. She makes me feel like I am in the best hands. I woke up and my husband was by my side. I came home yesterday and kissed my sweet babies. I was surrounded by my husband, sister-in-law and mother-in-law. I got to talk to my parents on the phone. I got many texts from concerned friends. My children's babysitter sent a wonderful dinner for us. And I slept. A lot.
So today, I feel like a big part of this journey is behind me. I want anyone out there that is facing this same risk to know...its okay. Its okay to be terrified. But in the end, after its done, the relief is amazing.
To ALL of you, go out today and do something great!
Monday, June 22, 2015
This is it...my last supper! (Dramatic, I know). But I'm NPO after midnight. Tomorrow morning I head into Abbott Northwestern Hospital to have my tubes and ovaries out. I thought I would be more nervous than I am. I feel pretty calm. I put the kids to bed and gave them extra hugs and kisses. I sat down and pulled out the journal that I had started when Colette was an infant. I battled what I now realize was some postpartum depression. When she was a baby, I became obsessed with the idea that something was going to happen to me and that I would leave my precious baby without a mother. The thought of her growing through adolescence and into womanhood without a mother pained me. So I started writing to her. It was my way of talking to her, giving some words of wisdom if I wasn't able to be physically present in her life. After a while, the fog of depression wore off and the journal got put in a box and moved several times (adding children makes for rearranging of rooms and adding on to the house). After I got my BRCA1 results, I pulled that journal out again and started writing. Now, to both my kids. Mostly to Colette (and I don't know why).
So I had a crappy dinner, a nice glass of wine, a shower and now I just need to go to sleep. Last night I had insomnia. Maybe I got my jitters out last night. At least I hope I did. I will wake up tomorrow, take off my wedding ring and other jewelry and Nathan will bring me to the hospital for 8:30 (Nice that I don't have to be there at the butt-crack of dawn, but a bummer that I can't have a cup of coffee before we head out). Nate's sister is coming to get Colette off to preschool and to hang with Anthony during the day. The plan is all set. I go, I go under, I wake up in menopause. That's it. Blech.
I had a moment the other day where I thought that I was making a mistake to keep my uterus. I have talked with so many women in my shoes that have opted to ditch the uterus too. And then I thought maybe I was being foolish. I mean, shit...I'm done with it. No more babies. Why risk it? I guess there is a part of me that wants to keep something. In this process, I will lose my ovaries and my breasts. I mean, damn! Let me keep my uterus (unless it turns out to be a giant pain in the ass...then it has to go).
So, instead of completely filleting (is that a word) myself...I will keep my uterus and have a Mirena IUD placed. It will give me some progesterone, and therefore some protection against endometrial and uterine cancer, especially should I need to go one estrogen replacement for menopause symptoms. (There is risk in having unopposed estrogen if you have your uterus). Risk. I am so tired of hearing that stupid word!!! There is an effing risk to every damn route I take.
Anyway....enough rambling. The plan is set. I'm all-in at this point. May the universe guide my surgeon's hands to a quick and precise removal of the offending parts! And may the pathology reports be clear! See y'all on the other side of menopause!
So I had a crappy dinner, a nice glass of wine, a shower and now I just need to go to sleep. Last night I had insomnia. Maybe I got my jitters out last night. At least I hope I did. I will wake up tomorrow, take off my wedding ring and other jewelry and Nathan will bring me to the hospital for 8:30 (Nice that I don't have to be there at the butt-crack of dawn, but a bummer that I can't have a cup of coffee before we head out). Nate's sister is coming to get Colette off to preschool and to hang with Anthony during the day. The plan is all set. I go, I go under, I wake up in menopause. That's it. Blech.
I had a moment the other day where I thought that I was making a mistake to keep my uterus. I have talked with so many women in my shoes that have opted to ditch the uterus too. And then I thought maybe I was being foolish. I mean, shit...I'm done with it. No more babies. Why risk it? I guess there is a part of me that wants to keep something. In this process, I will lose my ovaries and my breasts. I mean, damn! Let me keep my uterus (unless it turns out to be a giant pain in the ass...then it has to go).
So, instead of completely filleting (is that a word) myself...I will keep my uterus and have a Mirena IUD placed. It will give me some progesterone, and therefore some protection against endometrial and uterine cancer, especially should I need to go one estrogen replacement for menopause symptoms. (There is risk in having unopposed estrogen if you have your uterus). Risk. I am so tired of hearing that stupid word!!! There is an effing risk to every damn route I take.
Anyway....enough rambling. The plan is set. I'm all-in at this point. May the universe guide my surgeon's hands to a quick and precise removal of the offending parts! And may the pathology reports be clear! See y'all on the other side of menopause!
Friday, June 5, 2015
First Up......
Goodbye tubes and ovaries. I've got a surgery date scheduled for June 23. That's the day my tubes and ovaries go....and the day that I will start menopause. Woo-hoo! I had initially thought that I would get a hysterectomy too. While uterine cancer is not typically associated with BRCA-1, I do have several women in my family lineage that have had uterine cancer. Maybe there is some other genetic mutation floating around that has yet to be discovered, or maybe its that generations ago, women didn't talk as much to their doctors about what was normal/abnormal bleeding. Or maybe their doctors didn't ask.
I wasn't so much worried about uterine cancer as that I thought it would simplify hormone replacement therapy...I'd be able to get estrogen alone instead of adding progesterone. I would avoid having to deal with any bleeding that would need to be worked up....thus eliminating having to endure biopsies down the road.
BUT. I met with a gyn-onc surgeon and she brought me down from my overboard plan. She said, "You are the healthiest and thinnest patient I am going to see today." That was the first thing. I'm not sick. This woman deals with women day in and day out that are fighting for their lives and are locked into some crazy shit that I hope to never see. That's the point of my surgery. But then she went on to say, "Your uterus is not the thing that is going to kill you. You are a healthy person. Going more invasive for the sake of avoiding a nuisance is just inviting the risk of more complications." Of course! Duh. Why didn't I think of it that way? Because I am kind of a jump-to-worst-case-scenario person. So it gave me something to think about. Of course, if they go in and see something abnormal while getting my tubes and ovaries....then the dang uterus will have to come out anyway. But let's get to that when/if it happens.
So, long story short...I have elected to keep my uterus. And my regular OBGYN (who I love and adore) is going to perform the surgery.
Second Up.....
And as I was working in the garden today, I got the phone call from the plastic surgeon that my mastectomy has been scheduled for October 26. More on this later....because I still have some processing to do on it....
Goodbye tubes and ovaries. I've got a surgery date scheduled for June 23. That's the day my tubes and ovaries go....and the day that I will start menopause. Woo-hoo! I had initially thought that I would get a hysterectomy too. While uterine cancer is not typically associated with BRCA-1, I do have several women in my family lineage that have had uterine cancer. Maybe there is some other genetic mutation floating around that has yet to be discovered, or maybe its that generations ago, women didn't talk as much to their doctors about what was normal/abnormal bleeding. Or maybe their doctors didn't ask.
I wasn't so much worried about uterine cancer as that I thought it would simplify hormone replacement therapy...I'd be able to get estrogen alone instead of adding progesterone. I would avoid having to deal with any bleeding that would need to be worked up....thus eliminating having to endure biopsies down the road.
BUT. I met with a gyn-onc surgeon and she brought me down from my overboard plan. She said, "You are the healthiest and thinnest patient I am going to see today." That was the first thing. I'm not sick. This woman deals with women day in and day out that are fighting for their lives and are locked into some crazy shit that I hope to never see. That's the point of my surgery. But then she went on to say, "Your uterus is not the thing that is going to kill you. You are a healthy person. Going more invasive for the sake of avoiding a nuisance is just inviting the risk of more complications." Of course! Duh. Why didn't I think of it that way? Because I am kind of a jump-to-worst-case-scenario person. So it gave me something to think about. Of course, if they go in and see something abnormal while getting my tubes and ovaries....then the dang uterus will have to come out anyway. But let's get to that when/if it happens.
So, long story short...I have elected to keep my uterus. And my regular OBGYN (who I love and adore) is going to perform the surgery.
Second Up.....
And as I was working in the garden today, I got the phone call from the plastic surgeon that my mastectomy has been scheduled for October 26. More on this later....because I still have some processing to do on it....
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