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.
Thursday, June 25, 2015
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....
Thursday, June 4, 2015
5-31-15 All good things must come to an end...
Anthony is now 20 months old, and I am still breastfeeding him. I guess I should note here for those who are not familiar: I believe in extended breastfeeding. In the first 6 months of breastfeeding, you are so focused on making sure your baby is getting enough to eat, that sometimes it feels a little utilitarian. Don't get me wrong, it is an incredible bonding experience. But once your babe moves on to solid foods, nursing becomes a much more emotional experience. Those are some of the best times. It becomes more a of a parenting style... Its a way to connect and soothe your child. I nursed Colette until 2 months past her 2nd birthday, and only stopped because I was diagnosed with Lyme Disease and was starting an intense antibiotic regiment.
So here I am with Anthony. And I figured that since he is my last baby, I was just going to nurse him until he was ready. And he seems to love nursing. A lot. He is an active kid...always racing about. But he stops in periodically throughout the day to nurse for a few seconds here and there. Its like he's checking in. He will climb up on my lap and paw at my shirt saying, "This! This!" Most of the time, its endearing and incredibly adorable. Sometimes, I'm like, "Give me a break!"
When I learned that I had a BRCA1 mutation, I knew that our days of nursing were numbered. I slowly came to terms with it, but figured we'd keep going until I had a surgery date on the books. So imagine my dismay when I met with the breast surgeon and she told me that my mastectomy couldn't happen until I had stopped breastfeeding for at least FOUR MONTHS! And not only that, the MRI had the day before was worthless, because they can't see squat! I was crushed. A wave of overwhelming sadness washed over me. I knew I would have to stop, but hearing it out loud was just like getting hit with a truck. I don't know if its that it made my mastectomy all that more real, or if I was just realizing how much I loved breastfeeding.
I came home from the surgeon's office and wept. And then I got frantic. I want to have this surgery as soon as possible, because really, I want all of this to be in my rearview mirror. But also, I already met my insurance deductible this year, so I want to get it done in this calendar year. I was hoping to have surgery this summer because it is when I have access to the most support. This whole four months crap was throwing a monkey wrench in my plan. But also, it meant that I really needed to get on weaning!
So here I am in the midst of that. Tonight was the first night I put Anthony to bed without nursing him. He did okay. He still cries when I tell him no and says, "Want it! Want it!" And I say to him, "I know, Buddy...me too!" and try to hold him tight. Its painful emotionally. And its no cake walk physically either. I'm drinking ridiculous amounts of sage tea to try and get my milk to dry up. I even resorted to Sudafed (which is why I am wide awake typing this instead of sleeping!)
I think my biggest fear is that he won't snuggle with me after we stop nursing. I am going to miss laying in bed with him in the early morning and nursing. I get to have him right there, laying on my chest. We look at each other and he usually reaches out and grabs my nose, or points to my eyes, and occasionally unlatches to say, "eyes. nose. hair." or to give me a huge grin. I think I am mourning the loss of that special time. And also...knowing that after surgery I will have a huge loss of sensation. I was never really a boob person. My breasts always were just things there that got in the way. I never wore low-cut shirts or wore push-up bras. I could really take them or leave them. Until I became a mother. My breasts are what fed and nurtured my two children. My chest has been a place of comfort to them both. And I'm sad that has to come to an end. Its funny...the thing that has been so central to my mothering is also the thing that could potentially kill me.
As I have talked to family, friends and others....not many people have really understood my emotions around this. I get a lot of comments like, "He's gotten all the benefits of breastfeeding." and "He'll be okay. He has to stop sometime anyway." I know these things. But none of this addresses how I feel about it. I don't think anyone who hasn't breastfed their children beyond a year can really understand how deep a bond it is.
So we are working bit by bit to cut back. And I'm trying to savor every last moment of it. We have cut WAY back. The first couple days, he cried and cried...not understanding why I was refusing him. It was painful and I felt terrible. But he's adjusting and is more and more easily distracted from it. I have come to terms with the fact that my mastectomy won't happen until the fall. I am focusing now on scheduling my other surgery. I figure I can at least deal with the lower half first. I want to feel like I am making steps toward lowering my risks. I am meeting with the gyn-onc surgeon on Tuesday. Hopefully we can schedule my surgery, and I can start preparing for that. The recovery should be much quicker than for the mastectomy, so I should still be able to have a decent summer!
All these crazy things.
Anthony is now 20 months old, and I am still breastfeeding him. I guess I should note here for those who are not familiar: I believe in extended breastfeeding. In the first 6 months of breastfeeding, you are so focused on making sure your baby is getting enough to eat, that sometimes it feels a little utilitarian. Don't get me wrong, it is an incredible bonding experience. But once your babe moves on to solid foods, nursing becomes a much more emotional experience. Those are some of the best times. It becomes more a of a parenting style... Its a way to connect and soothe your child. I nursed Colette until 2 months past her 2nd birthday, and only stopped because I was diagnosed with Lyme Disease and was starting an intense antibiotic regiment.
So here I am with Anthony. And I figured that since he is my last baby, I was just going to nurse him until he was ready. And he seems to love nursing. A lot. He is an active kid...always racing about. But he stops in periodically throughout the day to nurse for a few seconds here and there. Its like he's checking in. He will climb up on my lap and paw at my shirt saying, "This! This!" Most of the time, its endearing and incredibly adorable. Sometimes, I'm like, "Give me a break!"
When I learned that I had a BRCA1 mutation, I knew that our days of nursing were numbered. I slowly came to terms with it, but figured we'd keep going until I had a surgery date on the books. So imagine my dismay when I met with the breast surgeon and she told me that my mastectomy couldn't happen until I had stopped breastfeeding for at least FOUR MONTHS! And not only that, the MRI had the day before was worthless, because they can't see squat! I was crushed. A wave of overwhelming sadness washed over me. I knew I would have to stop, but hearing it out loud was just like getting hit with a truck. I don't know if its that it made my mastectomy all that more real, or if I was just realizing how much I loved breastfeeding.
I came home from the surgeon's office and wept. And then I got frantic. I want to have this surgery as soon as possible, because really, I want all of this to be in my rearview mirror. But also, I already met my insurance deductible this year, so I want to get it done in this calendar year. I was hoping to have surgery this summer because it is when I have access to the most support. This whole four months crap was throwing a monkey wrench in my plan. But also, it meant that I really needed to get on weaning!
So here I am in the midst of that. Tonight was the first night I put Anthony to bed without nursing him. He did okay. He still cries when I tell him no and says, "Want it! Want it!" And I say to him, "I know, Buddy...me too!" and try to hold him tight. Its painful emotionally. And its no cake walk physically either. I'm drinking ridiculous amounts of sage tea to try and get my milk to dry up. I even resorted to Sudafed (which is why I am wide awake typing this instead of sleeping!)
I think my biggest fear is that he won't snuggle with me after we stop nursing. I am going to miss laying in bed with him in the early morning and nursing. I get to have him right there, laying on my chest. We look at each other and he usually reaches out and grabs my nose, or points to my eyes, and occasionally unlatches to say, "eyes. nose. hair." or to give me a huge grin. I think I am mourning the loss of that special time. And also...knowing that after surgery I will have a huge loss of sensation. I was never really a boob person. My breasts always were just things there that got in the way. I never wore low-cut shirts or wore push-up bras. I could really take them or leave them. Until I became a mother. My breasts are what fed and nurtured my two children. My chest has been a place of comfort to them both. And I'm sad that has to come to an end. Its funny...the thing that has been so central to my mothering is also the thing that could potentially kill me.
As I have talked to family, friends and others....not many people have really understood my emotions around this. I get a lot of comments like, "He's gotten all the benefits of breastfeeding." and "He'll be okay. He has to stop sometime anyway." I know these things. But none of this addresses how I feel about it. I don't think anyone who hasn't breastfed their children beyond a year can really understand how deep a bond it is.
So we are working bit by bit to cut back. And I'm trying to savor every last moment of it. We have cut WAY back. The first couple days, he cried and cried...not understanding why I was refusing him. It was painful and I felt terrible. But he's adjusting and is more and more easily distracted from it. I have come to terms with the fact that my mastectomy won't happen until the fall. I am focusing now on scheduling my other surgery. I figure I can at least deal with the lower half first. I want to feel like I am making steps toward lowering my risks. I am meeting with the gyn-onc surgeon on Tuesday. Hopefully we can schedule my surgery, and I can start preparing for that. The recovery should be much quicker than for the mastectomy, so I should still be able to have a decent summer!
All these crazy things.
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