Lately I feel like I am working in the medical field. I have been in constant contact with doctors, nurses and hospital staff for over a week now. I have two more appointments next week then surgery the following week. I feel like I am running on steam.
First week of school and I have missed so much already. I'm drained in the morning so I'm running on autopilot to get my middle schooler off to the bus stop and get ready for work myself. I'm so wore out at the end of the day all I want to do is lay in bed and be lazy.
Enough self pity...My husband is taking me out tonight. Let's say its my last HOORAH before a weekend full of meal planning, cooking and freezing for after surgery. After that I have four days of work and a weekend full of anxiety and cleaning. I hate to come home to a cluttered house when I can't do anything about it so we are on a mission to clean top to bottom before surgery. Three boys live here so that isn't an easy task.
Just got off the phone with Pre-Admission to go through my health history. I always have to go through my list of surgeries even though all of my surgeries were at the same hospital and they have the records. I always wonder why they don't just look it up.
I go back to see my oncologist next week before surgery and have to go to Pre-Admin Testing for blood work. Again, why are you typing my blood if you have all my records? I'm pretty sure I'm still A+ just like the last 20 times you have typed my blood.
My sarcasm and irritability come out more when I'm upset...can you tell?
As I promised in the title of this post, we are going to talk about sex. Well, the lack thereof actually. No sex for 8-10 weeks after surgery. Hmm...doesn't sound like fun huh?
I'm sure the first few weeks I won't want anything to do with sex but what about after? Even when I'm back to a normal routine will the medical menopause hinder my drive? Menopause can run havoc on a woman's sex drive. Some women say they don't see much of a difference but can I be so lucky?
I sure wasn't lucky finding out that I have a BRCA1 mutation. Yep, I'm a mutant. No super powers, darn.
Most of the studies I have seen show a 1% chance of being BRCA1 or BRCA2 positive in non-Jewish ethnicities. You have a better chance of winning the lottery than being BRCA positive. If one of your parents have a BRCA mutation you will have a 50% chance. Know your family history. If you don't know, ask. If anyone in your family has had breast or ovarian cancer, ask them if they were tested for genetic mutations. If so, get the results and tell your doctor. A person can't have a genetic mutation if neither of their parents have it.
Each of my children have a 50% chance of being BRCA positive. Someone was looking out for me by giving me three boys. I always wanted a girl at some point but men have less risk with the mutation. For one, there is less breast tissue and they don't have ovaries. The risk of prostate cancer does increase in men carrying BRCA1 mutations. Men carrying the mutation have a 16% chance of prostate cancer by age 70. Whereas, a woman with BRCA1 mutation carries an 87% chance of developing breast cancer. This is a lifetime risk but BRCA breast cancers are usually at a younger age than other hereditary breast cancers. My risk of ovarian with the mutation I have is 65%.
The mutation creates nonsense in the DNA sequence. Mine is 3604delA which means in the 6000 nucleotides composing the BRCA1 gene at position 3604 I am missing A. Everything after that is based on misread information because something is missing. What does this mean?
It means my body can't repair damaged DNA as easily as someone without the mutation because my BRCA gene that produces tumor suppressor proteins doesn't function properly. In a nutshell, my cells are likely to develop more genetic alterations that can lead to cancer.
This is all information a genetic counselor can explain to you.
Off I go for a night with my husband. Our last date night for the next month or so.
Friday, August 30, 2013
Thursday, August 29, 2013
Synchronicity
Synchronicity is the experience of two or more events as meaningfully related, whereas they are unlikely to be causally related. "A Wink from the Cosmos"
I received a call yesterday around 4:30 pm from my oncologist's office. Mary, the surgery scheduler was calling to schedule my surgery. She asks if September 9th is ok. I scream in my head, "That's too soon!" but oblige and write the date on a Post-It note at my desk.
After writing down the date, I look at it and realize what day it is. Its the day my mom lost her battle with ovarian cancer. On September 9, 2013 my mom will have been missed for 16 years. She will have missed 16 birthdays, Thanksgivings, Christmases, Anniversaries and Mother's Days. We will have missed 5,840 days of having her here on this planet with us.
I heard very little of the conversation with Mary. I traced that date on my pale yellow Post-It note until it wasn't legible then wrote it on another to start the process again. I ended up catching the time of surgery before hanging up and dialing my sister, Missy. I tried to play it cool since I was in the office and surrounded by coworkers but as soon as Missy asked me if I knew what day it was, I completely lost it. Self control was out the proverbial window.
When you lose someone close, you will hear "I'm sorry" about a billion times. Although I know some people mean it, I get tired of hearing it. Sometimes I want to say, "What are you sorry for? The fact that I lost someone that means more to me than you do or are you sorry that you mentioned it and you don't know what else to say?"
Then there's the "it gets easier" comment. No it doesn't! You learn to hide it or to go on with your life without that person but the loss never gets easier. Some days go without a hitch but every holiday, birthday, or special occasion you will be reminded of the person that is missing in your life. Sometimes for no reason you will wish you could rewind and do something different to make the short time you had even more special. You will think about the arguments you had and wish you could take them all back. You will wish you chose that person to spend Friday night with instead of ditching them for your friends. You will cherish the moments that you had and remember the little things that seemed so menial at the time.
Our wedding day was one of those special times that I wished my mother could have been present for. In a way she was. I incorporated a few details that most people wouldn't have noticed. The people that knew her and loved her knew the symbolism of those details and that is what mattered to me.
My thoughts on having this surgery knowing what that day was 16 years ago? Everything happens for a reason and I have an angel watching over me.
I received a call yesterday around 4:30 pm from my oncologist's office. Mary, the surgery scheduler was calling to schedule my surgery. She asks if September 9th is ok. I scream in my head, "That's too soon!" but oblige and write the date on a Post-It note at my desk.
After writing down the date, I look at it and realize what day it is. Its the day my mom lost her battle with ovarian cancer. On September 9, 2013 my mom will have been missed for 16 years. She will have missed 16 birthdays, Thanksgivings, Christmases, Anniversaries and Mother's Days. We will have missed 5,840 days of having her here on this planet with us.
I heard very little of the conversation with Mary. I traced that date on my pale yellow Post-It note until it wasn't legible then wrote it on another to start the process again. I ended up catching the time of surgery before hanging up and dialing my sister, Missy. I tried to play it cool since I was in the office and surrounded by coworkers but as soon as Missy asked me if I knew what day it was, I completely lost it. Self control was out the proverbial window.
When you lose someone close, you will hear "I'm sorry" about a billion times. Although I know some people mean it, I get tired of hearing it. Sometimes I want to say, "What are you sorry for? The fact that I lost someone that means more to me than you do or are you sorry that you mentioned it and you don't know what else to say?"
Then there's the "it gets easier" comment. No it doesn't! You learn to hide it or to go on with your life without that person but the loss never gets easier. Some days go without a hitch but every holiday, birthday, or special occasion you will be reminded of the person that is missing in your life. Sometimes for no reason you will wish you could rewind and do something different to make the short time you had even more special. You will think about the arguments you had and wish you could take them all back. You will wish you chose that person to spend Friday night with instead of ditching them for your friends. You will cherish the moments that you had and remember the little things that seemed so menial at the time.
Our wedding day was one of those special times that I wished my mother could have been present for. In a way she was. I incorporated a few details that most people wouldn't have noticed. The people that knew her and loved her knew the symbolism of those details and that is what mattered to me.
My thoughts on having this surgery knowing what that day was 16 years ago? Everything happens for a reason and I have an angel watching over me.
Tuesday, August 27, 2013
iPeriod, I will miss you.
For years I've tracked my periods through an app on my iPhone. Thank you to whomever created this app. It predicts even the most unpredictable cycles and gives you a sense of security knowing you won't have one of "those" embarrassing accidents we have all come to know and HATE. I've never had regular periods or so I thought. I just don't know how to track a 35 day cycle one month and a 26 day cycle the next month to predict my period. Over the years I have come to love my trusty iPeriod. Today I got my 7 day reminder. (yep, now you all know my cycle) I usually dismiss the reminder and think nothing of it for a few days. This time was different. I realized that this could be my last period EVER. I don't know why I am mourning my period. I have always hated it but over the years it has been a part of me. So it got me thinking, will I cherish my last period for all the gross, crampy glory that it is? Or will I hate this last one just as much as I hated all the others?
If you didn't realize I said "this COULD be my last period."
I saw my oncologist, Dr. R, today. What an amazing appointment! I left feeling a sense of security I didn't feel before.
My sister went with me to the appointment. I wasn't ready to face the Women's Cancer Center alone. Luckily, I can always count on her support. Blood doesn't make you family but love does!
Dr. R spent lots of time with us explaining my risks and benefits. We discussed my scheduled surgery and the chances of a second surgery. Even though it is a small chance, it isn't a chance I am willing to take. The pathology that would be ran with a routine surgery just won't cut it in my situation. My right ovary is enlarged and has follicles. He said the entire ovary should be dissected and 100-150 slides ran in pathology. What that means is...they will take out my ovary, cut it into slivers and look at the slivers of ovary through a microscope to check for cancer cells, pre-cancerous cells or abnormalities. With routine surgery through a gynecologist they run about 15 slides AFTER surgery for BRCA positive patients. What that means for me...if one of the 15 slides comes back with anything I will be back in surgery with Dr. R anyway. And that means decision time for me. Do I want to take a chance of a second surgery or them potentially missing something because the section of ovary they chose for pathology is a good part and not a bad part?
Pathology will be ran in the hospital while I am in surgery. Yep, while I am asleep under "Robbie the Robot" they are going to run pathology. Then if anything does come back bad Dr. R can remove more of the surrounding tissue until I'm clear or as clear as we can get, worst case scenario. One surgery with Dr. R and "Robbie" and I will be done.
A co-worker nicknamed the Surgical Robotics machine Robbie the Robot and no matter what I do I can't get it out of my head. I keep thinking my 11 year old would want to become a surgeon when he sees this machine. Its the ultimate 3D video game experience. For those of you that don't know about surgical robotics, get ready to be impressed.
Recovery time COULD be lessened but the ability to get more with a higher level of precision is a huge plus. Dr. R performed three radical hysterectomies using the Da Vinci yesterday and all three of the patients are going home today. I hate hospitals so that is great news for me.
All-in-all I am happy with the decision to let my oncologist do the surgery because he does this more often than Dr. P. Love Dr. P to death but when your life is on the line you want experience. To your surprise, I'm sure (insert sarcastic eye roll), there is a large amount of human error in surgery. Most of those errors can be fixed with no ill effects but one small piece of tissue left in my body could mean my death. My mom's doctor left one ovary during her hysterectomy and that is the one that killed her. I'm not willing to risk it. Ovaries aren't the only thing that can be affected by ovarian cancer. The blood vessels connected to the ovary and surrounding tissue are all susceptible. Why take the chance? Dr. R is taking it all out.
We talked more about hormone replacement therapy (HRT) and the benefits vs risk. Studies are so inconclusive that doctors shy away from it for BRCA positive patients. Many doctors say no hormone replacement therapy because if a woman ends up with breast cancer 15 years later, the recommendation for HRT can't bite them in the white coated ass. I've done my research on this and was highly impressed when Dr. R was reciting statistics from studies I have read. The problem is all the studies done are on postmenopausal women or a small case study that isn't a big enough sample to make much difference. 20 years from now there will be a huge medical "told you so" from one side and the other side will be hanging their heads in shame. At this point, we don't really know what the long term risk is.
I think I have decided to start on a low dose, estrogen only patch for a few months and slowly wean off of the hormones completely. There are benefits and risks with either and becomes a personal decision for the patient. Quality of life is a big part of that decision. I am removing most of my chance of ovarian cancer but if I'm miserable and don't feel like myself, is the surgery successful? The good thing about HRT is it isn't set in stone. I can try it one way, switch and then switch back if one isn't working for me.
Today's appointment was great. I got lots of answers to questions I have and made some big decisions that I feel are right for me. I cancelled my surgery with Dr. P and I'm waiting for the call to schedule my surgery with Dr. R. I feel like I'm making lots of progress so far. I'm not as scared as I thought I would be while planning a surgery and talking about cancer so often. I have a great family supporting me and helping me through this. I'm not sure I could be so strong without them.
If you didn't realize I said "this COULD be my last period."
I saw my oncologist, Dr. R, today. What an amazing appointment! I left feeling a sense of security I didn't feel before.
My sister went with me to the appointment. I wasn't ready to face the Women's Cancer Center alone. Luckily, I can always count on her support. Blood doesn't make you family but love does!
Dr. R spent lots of time with us explaining my risks and benefits. We discussed my scheduled surgery and the chances of a second surgery. Even though it is a small chance, it isn't a chance I am willing to take. The pathology that would be ran with a routine surgery just won't cut it in my situation. My right ovary is enlarged and has follicles. He said the entire ovary should be dissected and 100-150 slides ran in pathology. What that means is...they will take out my ovary, cut it into slivers and look at the slivers of ovary through a microscope to check for cancer cells, pre-cancerous cells or abnormalities. With routine surgery through a gynecologist they run about 15 slides AFTER surgery for BRCA positive patients. What that means for me...if one of the 15 slides comes back with anything I will be back in surgery with Dr. R anyway. And that means decision time for me. Do I want to take a chance of a second surgery or them potentially missing something because the section of ovary they chose for pathology is a good part and not a bad part?
Pathology will be ran in the hospital while I am in surgery. Yep, while I am asleep under "Robbie the Robot" they are going to run pathology. Then if anything does come back bad Dr. R can remove more of the surrounding tissue until I'm clear or as clear as we can get, worst case scenario. One surgery with Dr. R and "Robbie" and I will be done.
Recovery time COULD be lessened but the ability to get more with a higher level of precision is a huge plus. Dr. R performed three radical hysterectomies using the Da Vinci yesterday and all three of the patients are going home today. I hate hospitals so that is great news for me.
All-in-all I am happy with the decision to let my oncologist do the surgery because he does this more often than Dr. P. Love Dr. P to death but when your life is on the line you want experience. To your surprise, I'm sure (insert sarcastic eye roll), there is a large amount of human error in surgery. Most of those errors can be fixed with no ill effects but one small piece of tissue left in my body could mean my death. My mom's doctor left one ovary during her hysterectomy and that is the one that killed her. I'm not willing to risk it. Ovaries aren't the only thing that can be affected by ovarian cancer. The blood vessels connected to the ovary and surrounding tissue are all susceptible. Why take the chance? Dr. R is taking it all out.
We talked more about hormone replacement therapy (HRT) and the benefits vs risk. Studies are so inconclusive that doctors shy away from it for BRCA positive patients. Many doctors say no hormone replacement therapy because if a woman ends up with breast cancer 15 years later, the recommendation for HRT can't bite them in the white coated ass. I've done my research on this and was highly impressed when Dr. R was reciting statistics from studies I have read. The problem is all the studies done are on postmenopausal women or a small case study that isn't a big enough sample to make much difference. 20 years from now there will be a huge medical "told you so" from one side and the other side will be hanging their heads in shame. At this point, we don't really know what the long term risk is.
I think I have decided to start on a low dose, estrogen only patch for a few months and slowly wean off of the hormones completely. There are benefits and risks with either and becomes a personal decision for the patient. Quality of life is a big part of that decision. I am removing most of my chance of ovarian cancer but if I'm miserable and don't feel like myself, is the surgery successful? The good thing about HRT is it isn't set in stone. I can try it one way, switch and then switch back if one isn't working for me.
Today's appointment was great. I got lots of answers to questions I have and made some big decisions that I feel are right for me. I cancelled my surgery with Dr. P and I'm waiting for the call to schedule my surgery with Dr. R. I feel like I'm making lots of progress so far. I'm not as scared as I thought I would be while planning a surgery and talking about cancer so often. I have a great family supporting me and helping me through this. I'm not sure I could be so strong without them.
Monday, August 26, 2013
Sex Ed via Google Images
I woke up late after staying up with a toddler that refused to sleep. While I was drying my hair I missed the call from my doctor's office. Of course! That's how Mondays go. So I rush to call back hoping it wasn't bad news. I waited on hold for the nurse for 8 minutes and 5 seconds and finished getting ready for work as my body shook uncontrollably. Calls from doctors scare me. With the gene mutation and a touch of hypochondria, you automatically think the worst. Turns out it wasn't that bad. All my tests came back in the "normal range". The kicker is (insert dunt, dunt, DUH) the doctor doesn't want me to wait to schedule the hysterectomy. I am transferred over to the Surgery Scheduler, Gayle. At least I didn't have to hold for long this time.
Gayle asked me if September 18th is good for me. In my head I sarcastically said, "No, no day is good for me" as I write the date and time on an old receipt laying in the console of my car. She gives me the date and time for my follow up appointment and tells me the hospital will be calling me to come in for blood work soon. Then she gives me my surgery instructions. You know, the "don't eat, drink, smoke, have sex, take any medicine or anything else that may make you less likely to freak out that you are having surgery tomorrow" instructions.
I asked her to read me the order to make sure it was what Dr. P and I discussed. Ovaries...check, Fallopian Tubes...check, Uterus...check, Cervix...check. Yep its all going! To my husband's dismay of course. He didn't realize my cervix was coming out too. I think it shocked him a little. (I mentioned this blog is uncensored right)
My husband and I had a little talk about what my female anatomy will be like after surgery. Being the nursing school drop out that I am, I brought out Google Images and broke it down for him. Google can do so many things for you, even give Sex Ed classes in the comfort of your own bedroom. Here's an example of the different types of hysterectomy performed.
I am having a "radical hysterectomy" which means the only thing I will have left of my reproductive organs is the vagina. OK, for those boys reading...I know not something you want to hear about, right!? Well, here's the good part. No periods, no worries about accidental pregnancy and no PMS eventually. Just a year's worth of PMS in the beginning called Menopause.
All of this and it was just hitting 8:30 am.
Now my work day begins and I have to tell my managers about being off work for 4-6 weeks. I had talked to them about it last week but I was under the impression that the surgery would be a few months away instead of 3 weeks. I'm not sure I got the response I wanted. I asked about FMLA and got two different answers. I'm praying that the second answer from our interim HR person is the correct one and I will receive FMLA for my time off. Lots of stuff still up in the air but I'm one step closer on my journey.
I requested the paperwork to be mailed to close my annuity as well today. That just down right sucks. There goes that portion of my retirement. I don't think I will ever get to retire. After all the penalties I have to pay to close it early plus the taxes I have to pay on the income I'm left with about 60% of what I have in it. It should cover my wages while I'm off work but will do nothing to help with the medical bills that will swarm my mailbox soon. We won't even get into the health insurance debate.
I see my oncologist tomorrow. I am not looking forward to that at all. Not sure how it is going to feel in an office full of cancer patients. I took my mom to a lot of her appointments during her battle so I purposely stay away from those places now. I don't visit people in hospitals for this same reason. Those are memories I would rather leave deep inside where I have buried them.
Surgery #1...23 days and counting.
Gayle asked me if September 18th is good for me. In my head I sarcastically said, "No, no day is good for me" as I write the date and time on an old receipt laying in the console of my car. She gives me the date and time for my follow up appointment and tells me the hospital will be calling me to come in for blood work soon. Then she gives me my surgery instructions. You know, the "don't eat, drink, smoke, have sex, take any medicine or anything else that may make you less likely to freak out that you are having surgery tomorrow" instructions.
I asked her to read me the order to make sure it was what Dr. P and I discussed. Ovaries...check, Fallopian Tubes...check, Uterus...check, Cervix...check. Yep its all going! To my husband's dismay of course. He didn't realize my cervix was coming out too. I think it shocked him a little. (I mentioned this blog is uncensored right)
My husband and I had a little talk about what my female anatomy will be like after surgery. Being the nursing school drop out that I am, I brought out Google Images and broke it down for him. Google can do so many things for you, even give Sex Ed classes in the comfort of your own bedroom. Here's an example of the different types of hysterectomy performed.
I am having a "radical hysterectomy" which means the only thing I will have left of my reproductive organs is the vagina. OK, for those boys reading...I know not something you want to hear about, right!? Well, here's the good part. No periods, no worries about accidental pregnancy and no PMS eventually. Just a year's worth of PMS in the beginning called Menopause.
All of this and it was just hitting 8:30 am.
Now my work day begins and I have to tell my managers about being off work for 4-6 weeks. I had talked to them about it last week but I was under the impression that the surgery would be a few months away instead of 3 weeks. I'm not sure I got the response I wanted. I asked about FMLA and got two different answers. I'm praying that the second answer from our interim HR person is the correct one and I will receive FMLA for my time off. Lots of stuff still up in the air but I'm one step closer on my journey.
I requested the paperwork to be mailed to close my annuity as well today. That just down right sucks. There goes that portion of my retirement. I don't think I will ever get to retire. After all the penalties I have to pay to close it early plus the taxes I have to pay on the income I'm left with about 60% of what I have in it. It should cover my wages while I'm off work but will do nothing to help with the medical bills that will swarm my mailbox soon. We won't even get into the health insurance debate.
I see my oncologist tomorrow. I am not looking forward to that at all. Not sure how it is going to feel in an office full of cancer patients. I took my mom to a lot of her appointments during her battle so I purposely stay away from those places now. I don't visit people in hospitals for this same reason. Those are memories I would rather leave deep inside where I have buried them.
Surgery #1...23 days and counting.
Sunday, August 25, 2013
The beginning of my journey
Here it goes...
My first blog EVER. I want to document my journey and hope that I can help other women going through this. First I will warn you that writing was never my strength. Please excuse me for that. I plan on posting pictures of my journey as well so please keep that in mind.
I started this journey 4 years ago at my 6 week postpartum appointment. My OB/GYN suggested I take a simple blood test because of my family history. My mother lost her battle with ovarian cancer when I was 17 and my aunt was battling a breast cancer relapse at the time. I had just had my third son, had a emergency open appendectomy 5 days postpartum and had my gallbladder removed 2 weeks postpartum...what was another stick with a needle?! Little did I know, that blood test would change my life forever.
I got the call at work about a week later. I knew something was wrong when the doctor was on the other end of the line instead of a nurse. He gave me the news and the statistics. He wanted me to schedule a hysterectomy immediately and seek out a surgeon that would do the prophylactic bilateral mastectomy. Wow that was a lot of news to get at work. My brain shut down and all I could do was cry. I had this tiny baby and had just returned to work after a birth and two surgeries. I didn't want anything to do with hospitals or doctors at that moment.
A few weeks went by while I tried to forget this information and get back into the swing of things with a new baby. I processed the information slowly and had break downs many times while alone. Breastfeeding was more important to me than pushing to have the surgeries so I put it all on the back burner.
A few months later I developed a lump in my right breast. I called my family doctor and got in right away. He ordered a mammogram and breast ultrasound. My tests came back ok. I had a cyst in my milk duct but it would go away on its own. The reality of the gene mutation hit me and I knew I couldn't ignore this. I started getting mammos and ultrasounds every year from that point on.
I knew I wasn't ready to move forward with the surgeries yet but at least I was being proactive and getting tests regularly. I couldn't imagine taking away the precious moments with my last baby.
These breasts have fed three children and provided comfort for them. I couldn't take that away until he was ready. I think I needed to give him his time before I could even consider chopping them off. I felt that way...like I was chopping my boobs off.
I looked at pictures and was horrified at first. Now that I have done more research and found more support I feel better about it.
Jump forward two years and I married the love of my life. After 10 years of living together, three sons and all the tribulations of life we finally decided to get married. I know...a little backwards but o'well.
We live a crazy life. Its full of ups and downs, running like crazy for sports, different work schedules and just plain life. We make the best of it all and have a blast in the process.
Recently we had a scare with my father. His prostate has been enlarged and had to be removed. The thought of losing him made me realize that I need to get serious about BRCA1. I did my research and found a GYN that has lots of experience with BRCA. I guess she is in high demand because I had to wait 2 months to be seen. I went to my appointment thinking it would be the same as my previous doctor and I would have to ask for specific testing I wanted done and beg for things I thought I needed. Wow was I shocked! She is amazing! She walked in the room, sat down with me and asked my opinion first. She asked me where I was in my own head with this information and what I wanted. We discussed breastfeeding and my plan to wait for the breast surgery. She referred me to a general surgeon and plastic surgeon that work together well and have experience. Amazingly it was the plastics guy that I had already chosen for my breast surgery. I was impressed that we were on the same train of thought already. Before I even had a chance to get out my list of questions she was answering them during our talk. I went in planning to beg for breast MRIs and she brought it up first. I had been begging my previous doctor for years but she guaranteed me that she will get it approved within the next 4-6 weeks. She did a CA-125 test while I was there and ordered an ultrasound for the next day. Wow what a difference it makes to go to someone that knows more about BRCA!
We discussed the hysterectomy portion and decided that it is time to move forward with it. She also referred me to an oncologist that specializes in female cancers. No waiting there...she called personally and got me an appointment for three days later. I see him Tuesday morning. She told me he may recommend an estrogen blocker. I think I'm more terrified of the medical menopause than the surgery.
I am calling my GYN back tomorrow to set the date for my hysterectomy. I had to get some things in line after seeing her on Thursday. Short Term Disability denied me because I'm not outside of my 12 month preexisting clause so I have decided to liquidate my annuity to cover my wages. Lots of big decisions and emotions over the past few days but I'm handling it.
A few weeks ago I decided I needed something to remind me daily that I am BRCA1 positive so I got a tattoo. I decided I wanted the breast and ovarian cancer ribbon and added the word Strength because it takes a lot to get through all of this. At the end of my journey I want to add the word Previvor to it somehow.
Know your options, talk to others, join a group, make the decisions that are right for you. For me the decision is clear because I watched my mom battle ovarian cancer for over two years. I saw the fight and I watched her lose. The journey scares me but cancer scares me more. I live every day of my life feeling like I'm waiting for cancer to strike and I'm tired of it.
My first blog EVER. I want to document my journey and hope that I can help other women going through this. First I will warn you that writing was never my strength. Please excuse me for that. I plan on posting pictures of my journey as well so please keep that in mind.
I started this journey 4 years ago at my 6 week postpartum appointment. My OB/GYN suggested I take a simple blood test because of my family history. My mother lost her battle with ovarian cancer when I was 17 and my aunt was battling a breast cancer relapse at the time. I had just had my third son, had a emergency open appendectomy 5 days postpartum and had my gallbladder removed 2 weeks postpartum...what was another stick with a needle?! Little did I know, that blood test would change my life forever.
A baby and two surgeries later
I got the call at work about a week later. I knew something was wrong when the doctor was on the other end of the line instead of a nurse. He gave me the news and the statistics. He wanted me to schedule a hysterectomy immediately and seek out a surgeon that would do the prophylactic bilateral mastectomy. Wow that was a lot of news to get at work. My brain shut down and all I could do was cry. I had this tiny baby and had just returned to work after a birth and two surgeries. I didn't want anything to do with hospitals or doctors at that moment.
A few weeks went by while I tried to forget this information and get back into the swing of things with a new baby. I processed the information slowly and had break downs many times while alone. Breastfeeding was more important to me than pushing to have the surgeries so I put it all on the back burner.
A few months later I developed a lump in my right breast. I called my family doctor and got in right away. He ordered a mammogram and breast ultrasound. My tests came back ok. I had a cyst in my milk duct but it would go away on its own. The reality of the gene mutation hit me and I knew I couldn't ignore this. I started getting mammos and ultrasounds every year from that point on.
I knew I wasn't ready to move forward with the surgeries yet but at least I was being proactive and getting tests regularly. I couldn't imagine taking away the precious moments with my last baby.
nursing from a mother's view
These breasts have fed three children and provided comfort for them. I couldn't take that away until he was ready. I think I needed to give him his time before I could even consider chopping them off. I felt that way...like I was chopping my boobs off.
I looked at pictures and was horrified at first. Now that I have done more research and found more support I feel better about it.
Jump forward two years and I married the love of my life. After 10 years of living together, three sons and all the tribulations of life we finally decided to get married. I know...a little backwards but o'well.
Our wedding day
We live a crazy life. Its full of ups and downs, running like crazy for sports, different work schedules and just plain life. We make the best of it all and have a blast in the process.
Recently we had a scare with my father. His prostate has been enlarged and had to be removed. The thought of losing him made me realize that I need to get serious about BRCA1. I did my research and found a GYN that has lots of experience with BRCA. I guess she is in high demand because I had to wait 2 months to be seen. I went to my appointment thinking it would be the same as my previous doctor and I would have to ask for specific testing I wanted done and beg for things I thought I needed. Wow was I shocked! She is amazing! She walked in the room, sat down with me and asked my opinion first. She asked me where I was in my own head with this information and what I wanted. We discussed breastfeeding and my plan to wait for the breast surgery. She referred me to a general surgeon and plastic surgeon that work together well and have experience. Amazingly it was the plastics guy that I had already chosen for my breast surgery. I was impressed that we were on the same train of thought already. Before I even had a chance to get out my list of questions she was answering them during our talk. I went in planning to beg for breast MRIs and she brought it up first. I had been begging my previous doctor for years but she guaranteed me that she will get it approved within the next 4-6 weeks. She did a CA-125 test while I was there and ordered an ultrasound for the next day. Wow what a difference it makes to go to someone that knows more about BRCA!
We discussed the hysterectomy portion and decided that it is time to move forward with it. She also referred me to an oncologist that specializes in female cancers. No waiting there...she called personally and got me an appointment for three days later. I see him Tuesday morning. She told me he may recommend an estrogen blocker. I think I'm more terrified of the medical menopause than the surgery.
I am calling my GYN back tomorrow to set the date for my hysterectomy. I had to get some things in line after seeing her on Thursday. Short Term Disability denied me because I'm not outside of my 12 month preexisting clause so I have decided to liquidate my annuity to cover my wages. Lots of big decisions and emotions over the past few days but I'm handling it.
A few weeks ago I decided I needed something to remind me daily that I am BRCA1 positive so I got a tattoo. I decided I wanted the breast and ovarian cancer ribbon and added the word Strength because it takes a lot to get through all of this. At the end of my journey I want to add the word Previvor to it somehow.
That's the beginning. I lost my mother to ovarian cancer when I was a teenager and I don't want that to happen to my boys.
My boys
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