Today was Black Friday.I am three weeks post op. I have had one fill. I found a dress. I loved this dress. Even my little S loved it and she is our fashionista. So I decide to try it on first before buying simply because the price was hard for me to swallow. I loved it though.
I get the dress on...
I am completely devastated. I look at it and where there should be hill there is nothing. The dress simply pointed it out. I know it wont always be that way. I wanted to cry but my girls were with me. So I take a deep breath and remind myself "I don't have cancer", "I am one lucky girl".
Then I realized a big problem. No seriously a HUGE problem. It was a pull over dress. How in the world am I going to get out of it. I couldn't lift my arms very high. I couldn't just pull it off. I was litterally stuck. I tried for five minutes as tears threatened to run down my cheeks. I thought about calling my husband. Then my sweet little S said I will help you mom. She did.
Thank heavens.
Now I can laugh at it. It really was kind of funny. Some other things that have kept my spirits up is all the jokes I make seriously. I never thought I would be laughing about the funny side of popable boobs. I did ask my husband if he thoughts I could learn to flex them like those big muscle people. I have tried despite my best efforts my brain isn't connected to those muscles. Maybe I can learn to do the wave.
I have also offered to have a chest bump war with a few people. I am always the loser on that one because I my height. Let me tell you. I could totally win. They are hard as rocks you will lose.
I had a dinner party to go to. I was a little worried about how my dress would fit . I stuffed my bra. Seriously I did. I didn't think I would ever be so excited to stuff my bra.
I have a flabby abs but rock solid pecks. Kind of funny I have always strive to be different so having pecks instead of abs is no surprise.
Well for now those are my funnies. I am sure that there will be more.... I am really good at predicting cold weather my peck muscles can tell the wind like no ones business....
Tuesday, December 18, 2012
Thursday, December 6, 2012
The first two weeks post surgery
I am not sure I remember much about those two weeks. Thanks to the amount of drugs I was on I not only survived them but managed to provide comical relief along the way. Yes see I am a light weight when it comes to drugs. Were talking 30 minutes after I take benedryl I am out. No hope of staying awake no matter what I do. There is one thing I know most pain drugs make me do. CHAT!!! Yes I will chat about anything and everything. I guess I am just lucky that way. I would talk to my best friend who showed up faithfully every night to empty my drains. She would empty them and I would talk. Then she would just say "oh Dollie that's the drugs talking." I even called my mom and told her I needed to go. I had to get back to work because I was working at subway(for the record I don't work). Yes I found myself talking to people and itching a lot. No seriously itching we are talking uncontrollable itching. Thankfully everyone who came to visit me loves me enough to laugh at what I was saying and then just left without making me feel too crazy.
Week one was filled with those wretched drains. They were awful.... one side drained beautifully. The other side didn't drain really at all. It just kept getting bigger and bigger with fluid build up... luckily for me I went to see a resident after week one and he took them out. Freedom was amazing. No drains. Clothes were easier to wear. Showers were allowed. One of the most frustrating things was needed help. I am pretty independent. I like doing for others and taking care of others but to have to be taken care of was hard to accept. I needed help getting dressed. I needed help bathing. I needed help getting a cup to drink. I needed help opening medicine bottles. I needed help and padding to hold my toddler. So many things you never think about until you are put in that situation. I was more depressed about what I couldn't do than the loss of a body part.
I did get depressed mentally. Cancer was no longer looking over my shoulder. I was no longer obsessively feeling my breast. Of course I didn't have any but a huge weight had been lifted. Huge! At the two week appointments I got my first fill. I received 85 in one and 90 in the other. I said goodbye to some doctors. They were no longer apart of my team. I am now a plastics patient. The day we left Seattle to head back home I was pretty emotional. I was saying good my to my cancer fight before I even had to fight. I was saying goodbye to the broken hearted girl who tested positive and hello to the survivor. I was saying hello to the rest of my life.
Week one was filled with those wretched drains. They were awful.... one side drained beautifully. The other side didn't drain really at all. It just kept getting bigger and bigger with fluid build up... luckily for me I went to see a resident after week one and he took them out. Freedom was amazing. No drains. Clothes were easier to wear. Showers were allowed. One of the most frustrating things was needed help. I am pretty independent. I like doing for others and taking care of others but to have to be taken care of was hard to accept. I needed help getting dressed. I needed help bathing. I needed help getting a cup to drink. I needed help opening medicine bottles. I needed help and padding to hold my toddler. So many things you never think about until you are put in that situation. I was more depressed about what I couldn't do than the loss of a body part.
I did get depressed mentally. Cancer was no longer looking over my shoulder. I was no longer obsessively feeling my breast. Of course I didn't have any but a huge weight had been lifted. Huge! At the two week appointments I got my first fill. I received 85 in one and 90 in the other. I said goodbye to some doctors. They were no longer apart of my team. I am now a plastics patient. The day we left Seattle to head back home I was pretty emotional. I was saying good my to my cancer fight before I even had to fight. I was saying goodbye to the broken hearted girl who tested positive and hello to the survivor. I was saying hello to the rest of my life.
Saturday, December 1, 2012
SURGERY
We had driven over to Seattle the night before my surgery. It honestly was a very calm and nice trip. It took me a while to fall asleep. My husband though was breathing deep and heavy in his sleep. I envied him luckily for me there is internet. I stayed awake doing more research about the surgery. Luckily though before I scared out of my mind I fell asleep. I woke up about 4:45am when the trash truck came. What was I going to do now?
Thankfully I have friends who are three hours ahead of me. So I started texting away. It was nice to chat with people who felt like home to me. I then painted my toes pink. I know that might not seem like much but to me it was acceptance. It was coming to terms with my new life. I was BRCA1 positive. I was about to become a previvor. I was about to join a sisterhood that I didn't ever think I would be a part of. As we got up and got ready to go to the hospital I read a card from one of my closest friends. Her words brought tears to my eyes. She loves me but more than that I felt like I was getting a pep talk. Game time!!!
I think one of the hardest things about going into such a big surgery is waiting. The waiting. Lots of waiting. Answer questions. WAIT. Start IV. WAIT. Get permanent marker tattoos by plastic surgeon. WAIT. See obgyn oncologist to sign papers. WAIT. Talk with a poor kid who obviously was just looking for a job to look good on his resume. He was asking me to donate tissue samples to a database. WAIT. Talk with Breast Surgeon. WAIT. Talk with head anesthesia WAIT. Talk with the two ladies who will be my anesthesia. WAIT. Say goodbye to hubby and it is time to roll. The very last thing I remember is on the table and everyone crowding around the table verifying my name, my birth date and the surgery I was to have.
Waking up wasn't too bad. This wasn't my first surgery but non of the other ones compared to the amount of time I was intubated with this one. My mouth and throat hurt so bad more so than the elephant that happened to be dancing on my chest. Please let me have ice. The lady made me drink the yucky stuff to keep my stomach calm so I could have ice. She was being stingy with the ice. C'mon lady I can't swallow and breathe. So dry. Like desert dry. So dry my lips are sticking to my teeth. She kept getting on me about waking up. If I wanted ice I needed to wake up. OK I will try.
Something happened. I am not sure what but I remember that feeling in the air. Something happened to a patient. The nurses seemed different. They seemed sad. I later learned something did happened. We don't know what but Micah said the whole atmosphere was different.
We were transferred up to my room. Micah was allowed to stay on a cot thingy that was way too small for his stature. I slept pretty well. In the morning I was determined to get up out of bed. The nurses took the leg compression things off so I could sit at the edge of the bed. Whoa!! Is that my feet? I didn't have a baby why are they so fat. I asked micah to rub them. We need to get them unfat. While I was talking to the nurses one of them started laughing because I started out talking normal but would have to stop because my lips were sticking to my teeth again. They wanted me to go for a walk. They said just to the end of my room. Poor nurses had no idea how stubborn I am. I walked to the end of the room, out the door and around the little nurses pod basically one big square. Yeah! Felt so good to walk although a little lopsided. My Doctor came in to see me. She originally said two nights but took one look at me sitting at the edge of the bed and said "You can go home I don't usually see patients up sitting at the edge of the bed with color in their faces and talking to me with as late as you got out of surgery last night." Woot! Going home.
I got dressed. We got packed. Discharge papers and were on our way. I took some medicine before we left. I pretty much slept the whole way home (2 1/2 hours). I remember waking up once. I just happened to wake up when we were passing an accident and a truck was on it's side. Yup that is all I remember about the drive. I remember thinking I did it. I took cancer and just gave it a whooping!
Thankfully I have friends who are three hours ahead of me. So I started texting away. It was nice to chat with people who felt like home to me. I then painted my toes pink. I know that might not seem like much but to me it was acceptance. It was coming to terms with my new life. I was BRCA1 positive. I was about to become a previvor. I was about to join a sisterhood that I didn't ever think I would be a part of. As we got up and got ready to go to the hospital I read a card from one of my closest friends. Her words brought tears to my eyes. She loves me but more than that I felt like I was getting a pep talk. Game time!!!
I think one of the hardest things about going into such a big surgery is waiting. The waiting. Lots of waiting. Answer questions. WAIT. Start IV. WAIT. Get permanent marker tattoos by plastic surgeon. WAIT. See obgyn oncologist to sign papers. WAIT. Talk with a poor kid who obviously was just looking for a job to look good on his resume. He was asking me to donate tissue samples to a database. WAIT. Talk with Breast Surgeon. WAIT. Talk with head anesthesia WAIT. Talk with the two ladies who will be my anesthesia. WAIT. Say goodbye to hubby and it is time to roll. The very last thing I remember is on the table and everyone crowding around the table verifying my name, my birth date and the surgery I was to have.
Waking up wasn't too bad. This wasn't my first surgery but non of the other ones compared to the amount of time I was intubated with this one. My mouth and throat hurt so bad more so than the elephant that happened to be dancing on my chest. Please let me have ice. The lady made me drink the yucky stuff to keep my stomach calm so I could have ice. She was being stingy with the ice. C'mon lady I can't swallow and breathe. So dry. Like desert dry. So dry my lips are sticking to my teeth. She kept getting on me about waking up. If I wanted ice I needed to wake up. OK I will try.
Something happened. I am not sure what but I remember that feeling in the air. Something happened to a patient. The nurses seemed different. They seemed sad. I later learned something did happened. We don't know what but Micah said the whole atmosphere was different.
We were transferred up to my room. Micah was allowed to stay on a cot thingy that was way too small for his stature. I slept pretty well. In the morning I was determined to get up out of bed. The nurses took the leg compression things off so I could sit at the edge of the bed. Whoa!! Is that my feet? I didn't have a baby why are they so fat. I asked micah to rub them. We need to get them unfat. While I was talking to the nurses one of them started laughing because I started out talking normal but would have to stop because my lips were sticking to my teeth again. They wanted me to go for a walk. They said just to the end of my room. Poor nurses had no idea how stubborn I am. I walked to the end of the room, out the door and around the little nurses pod basically one big square. Yeah! Felt so good to walk although a little lopsided. My Doctor came in to see me. She originally said two nights but took one look at me sitting at the edge of the bed and said "You can go home I don't usually see patients up sitting at the edge of the bed with color in their faces and talking to me with as late as you got out of surgery last night." Woot! Going home.
I got dressed. We got packed. Discharge papers and were on our way. I took some medicine before we left. I pretty much slept the whole way home (2 1/2 hours). I remember waking up once. I just happened to wake up when we were passing an accident and a truck was on it's side. Yup that is all I remember about the drive. I remember thinking I did it. I took cancer and just gave it a whooping!
Knowing what to focus on...
I couldn't believe it was positive still. Not only was it positive but two of my kids will likely be positive. More than likely and least one of them will be a girl. The hardest thing to do was realize I can't focus on the possibilities of my kids yet. I have to get through my journey first. I have to show my kids that they have choices when they are old enough.
The Surgery was scheduled for October 31, 2012. Leading up to the surgery I was truly blessed with a peaceful feeling. I felt so lucky to know before I was diagnosed with cancer. Leading up to the surgery date was another round of Doctor visits and tests. I met with my plastic surgeon. I love her. She is soft spoken but very very attentive and detail oriented. She took pictures of my breasts so she could create a plan of attack. After meeting with her I had a meeting with an ultrasound to get a visual on my ovaries. I also was scheduled for a breast MRI. Definitely a little uncomfortable but I was so so tired that I fell asleep during the MRI.
The surgery I was scheduled for was a Double Mastectomy with immediate reconstruction and I had my Fallopian tubes removed (they believe ovarian cancer starts out in the tubes). Thank fully I was done having children at 29. Everything was going along smoothly until a nurse called me on a Friday night to let me know that they found something on my MRI.
I was shocked, stunned, terrified. WHAT?!?! They said half the markers on the finding were cancerous flags and half were normal flags. Ok so what's next? All I could think was "Heavenly Father I will voluntarily give my boobs but please don't take my hair too." I can't tell you how many times I tried to negotiate with Him. I drove over to Seattle for the needle biopsy. I was told that I would have an ultrasound done with a radiologist and a needle guided biopsy after the initial ultrasound. I get in there and lay down and we started the ultrasound with normal chit chat. She looks and looks and then says I can't find where they said it was supposed to be. I then said well I had an ultrasound in July and they found a lymph node that had migrated into my breast. She said "Yes I see that but I don't see anything else". She let me to go get some body markers. She came back and said "I think you might be right I think it might be this lymph node." Then she proceeded to measure the lymph node and said she would be back. She came back and said she had placed the MRI over the ultrasound and it was indeed my lymph node. I started bawling. I couldn't believe it. I don't have cancer. I just have a lymph node.
I have never been happier for news. If she had been a cute man I might have kissed him I was so so so happy and so so so relieved.
Thank Heavens it was normal. I can now go on to the surgery with a peace of mind.
The Surgery was scheduled for October 31, 2012. Leading up to the surgery I was truly blessed with a peaceful feeling. I felt so lucky to know before I was diagnosed with cancer. Leading up to the surgery date was another round of Doctor visits and tests. I met with my plastic surgeon. I love her. She is soft spoken but very very attentive and detail oriented. She took pictures of my breasts so she could create a plan of attack. After meeting with her I had a meeting with an ultrasound to get a visual on my ovaries. I also was scheduled for a breast MRI. Definitely a little uncomfortable but I was so so tired that I fell asleep during the MRI.
The surgery I was scheduled for was a Double Mastectomy with immediate reconstruction and I had my Fallopian tubes removed (they believe ovarian cancer starts out in the tubes). Thank fully I was done having children at 29. Everything was going along smoothly until a nurse called me on a Friday night to let me know that they found something on my MRI.
I was shocked, stunned, terrified. WHAT?!?! They said half the markers on the finding were cancerous flags and half were normal flags. Ok so what's next? All I could think was "Heavenly Father I will voluntarily give my boobs but please don't take my hair too." I can't tell you how many times I tried to negotiate with Him. I drove over to Seattle for the needle biopsy. I was told that I would have an ultrasound done with a radiologist and a needle guided biopsy after the initial ultrasound. I get in there and lay down and we started the ultrasound with normal chit chat. She looks and looks and then says I can't find where they said it was supposed to be. I then said well I had an ultrasound in July and they found a lymph node that had migrated into my breast. She said "Yes I see that but I don't see anything else". She let me to go get some body markers. She came back and said "I think you might be right I think it might be this lymph node." Then she proceeded to measure the lymph node and said she would be back. She came back and said she had placed the MRI over the ultrasound and it was indeed my lymph node. I started bawling. I couldn't believe it. I don't have cancer. I just have a lymph node.
I have never been happier for news. If she had been a cute man I might have kissed him I was so so so happy and so so so relieved.
Thank Heavens it was normal. I can now go on to the surgery with a peace of mind.
Sunday, November 25, 2012
Testing Positive and Trying to Remain Positive
How in the heck did the test come back positive? I don't remember much from the phone conversation. I hung up with her and remained calm enough to call my husband and give him the bad news. Then I hung up with him and called my friend. We chatted for a little while about the shock we were experiencing. It seemed so surreal. How could this be happening to little ol me. I mean a just over a month ago I didn't even really understand that I even had the risk. My husband showed up with flowers and chocolate ( that I had asked him to pick up two days ago for a craving). He said "We're in this together" and then gave me a hug. I crumpled under his hug. I bawled. Then I thought what if I heard her wrong? What if this was just a big misunderstanding? Maybe a name mixup. My husband shed a few tears watching me crumple. We gathered ourselves together. He had to get back to work and I had to pick up our daughter from preschool. I got through the day but the hardest part was yet to come.
Waking up the next morning. It's not like I thought it was going to change. I just didn't expect it to be the same.
From the time I considered getting tested I prayed. I prayed hard. My prayer wasn't asking it to come back negative it was what should I do with this information. I knew from the time I said out loud that I was going to get tested that I would get a mastectomy. I wish I could explain how I knew. It literally was God telling me that this is something I am supposed to do if it came back positive. So being positive and thinking do I want to be told "I have breast cancer" or "Do I want to choose to never hear Breast Cancer uttered in reference to me".
Waking up the next morning. It's not like I thought it was going to change. I just didn't expect it to be the same.
From the time I considered getting tested I prayed. I prayed hard. My prayer wasn't asking it to come back negative it was what should I do with this information. I knew from the time I said out loud that I was going to get tested that I would get a mastectomy. I wish I could explain how I knew. It literally was God telling me that this is something I am supposed to do if it came back positive. So being positive and thinking do I want to be told "I have breast cancer" or "Do I want to choose to never hear Breast Cancer uttered in reference to me".
Then begins the blur of days running together as you try to piece together what it means to have the yucky gene. Lots of research lots of phone calls. Then I end up getting my first round of appointments. It felt good to do something like I was moving towards no longer being a victim to the news but more of a taking charge of my fate. As I prepared to go to the first round of doctors which included OBGYN oncologist, Breast oncologist, Breast oncologist surgeon and a social worker. I felt like meeting with my "team" yes I have a cancer team. It is sobering to have a cancer team. I have an oncologist, not just one I have two. Where did this come from? At least I know I don't have to sit and wait for cancer to hit.
He has protected my family so many times. He has never lead me astray. Who am I to question it when it comes to cancer?
Tuesday, October 30, 2012
Why test? What does it mean to know?
I am by no means an expert. You are welcome to take what I say with a grain of salt even. I don't claim to have all the answers. I am certainly not a journalist and it will show by my lack of grammar. I am simply sharing my story to help others who will walk where I am going.
Deciding to get tested in my opinion was the hardest decision.
How I came to get tested was really kind of weird. In June 2012 I had some pain in my left breast. Very VERY unusual for me. I never experienced pain when I was pregnant. My breast were something that just existed as part of my body. So pain in the left one was a little alarming to me. I mentioned it to a friend who happened to be a MD. He asked a little family history of breast cancer. I had none. He then mentioned going to my MD to get it check out just in case. I went to my primary care physician and she did an exam. She told me I had lumpy breast and she would rather we take a look just to make sure. Me, honestly I was completely fine with that.
As I sat there waiting for my mammogram reality punched me in the stomach. I am waaaaaayyyyyy to young only 29 years old. I have no family history that I know of. What the heck am I doing sitting here waiting for them to tell me if they find anything abnormal. The mammogram was a welcomed interruption from my overactive imagination of worst case scenarios. As least they needed some questions answered and pulled me out of my brain long enough to focus and realize I don't have cancer yet. At least that I know of. After the mammogram and ultrasound I cried. I cried hard I was terrified. What did I just do? What kind of results would I have? Do I have some sort of family history that I just didn't know about?
After calming down I remember my aunt knew some more information about what my paternal grandma had passed away from. I simply thought "I need to talk to her". As I started this conversation I realized while breast cancer didn't run much in my family my grandma passed away from Ovarian cancer. My grandma had tested positive for the BRCA1 gene. Each of her children had gotten tested except for one. My dad.
Aunt K was negative, Aunt J was positive, Uncle W was negative.
It wasn't a very well known well studied test when they were tested. After I got off the phone with her I knew. I needed to get tested. I just knew that was the path I should take. However as I started to think about genetic testing there was one question that kept ringing in my head "what would I do with the results.". I am the type of person who woud obsessively do exams even at thought of having the gene. i would mentally go to the worst case scenerio it's cancer. Every little imaginary lump, every twinge in my lower abdomen every little everything would be cancer. I felt as though I would be a victim to the news unless I had a plan. In my heart I knew if it came back positive I would choose to take my breast off. Sounds drastic I know but once I prayed Iknewthat wasthe right path for me.
So now I was ready to convince my PCP(primary care provider) that I needed the testing done.
When she walked in the door. I started out by saying "I think I should get genetic testing" she simply said "I agree". I then continued to try and convince her only to realize that she had said yes. She wrote up the referral and it was off to wait for a call for the appointment to see a genetic counselor.
It was interesting to see the counselor. She gave me all of the information about what it means to test positive or negative. If you test positive you have an 87% chance of developing Breast Cancer and a 60%chance of developing ovarian cancer. Each of these statistics are purely that and vary from year to year give or take.
After the informational session and analyzing my mental stability I still decided to get tested. So weird to think a rinky dink little vial of blood can change your life for forever. Not just your life but your children and their children it is something that keeps on giving.
The Wait. Waiting was pretty easy since I work at the local high school as a coach for our color guard team. The waiting for once seemed the easier part. While waiting some days I would think it is going to be positive. I would go to the absolutely devastating place. How could I face this. Then the other days I would consider myself grateful that I am negative. That I really really escaped fate. In the end there would only be one outcome. As I got on the phone for the genetic testing results my heart sank. I just knew it.
Deciding to get tested in my opinion was the hardest decision.
How I came to get tested was really kind of weird. In June 2012 I had some pain in my left breast. Very VERY unusual for me. I never experienced pain when I was pregnant. My breast were something that just existed as part of my body. So pain in the left one was a little alarming to me. I mentioned it to a friend who happened to be a MD. He asked a little family history of breast cancer. I had none. He then mentioned going to my MD to get it check out just in case. I went to my primary care physician and she did an exam. She told me I had lumpy breast and she would rather we take a look just to make sure. Me, honestly I was completely fine with that.
As I sat there waiting for my mammogram reality punched me in the stomach. I am waaaaaayyyyyy to young only 29 years old. I have no family history that I know of. What the heck am I doing sitting here waiting for them to tell me if they find anything abnormal. The mammogram was a welcomed interruption from my overactive imagination of worst case scenarios. As least they needed some questions answered and pulled me out of my brain long enough to focus and realize I don't have cancer yet. At least that I know of. After the mammogram and ultrasound I cried. I cried hard I was terrified. What did I just do? What kind of results would I have? Do I have some sort of family history that I just didn't know about?
After calming down I remember my aunt knew some more information about what my paternal grandma had passed away from. I simply thought "I need to talk to her". As I started this conversation I realized while breast cancer didn't run much in my family my grandma passed away from Ovarian cancer. My grandma had tested positive for the BRCA1 gene. Each of her children had gotten tested except for one. My dad.
Aunt K was negative, Aunt J was positive, Uncle W was negative.
It wasn't a very well known well studied test when they were tested. After I got off the phone with her I knew. I needed to get tested. I just knew that was the path I should take. However as I started to think about genetic testing there was one question that kept ringing in my head "what would I do with the results.". I am the type of person who woud obsessively do exams even at thought of having the gene. i would mentally go to the worst case scenerio it's cancer. Every little imaginary lump, every twinge in my lower abdomen every little everything would be cancer. I felt as though I would be a victim to the news unless I had a plan. In my heart I knew if it came back positive I would choose to take my breast off. Sounds drastic I know but once I prayed Iknewthat wasthe right path for me.
So now I was ready to convince my PCP(primary care provider) that I needed the testing done.
When she walked in the door. I started out by saying "I think I should get genetic testing" she simply said "I agree". I then continued to try and convince her only to realize that she had said yes. She wrote up the referral and it was off to wait for a call for the appointment to see a genetic counselor.
It was interesting to see the counselor. She gave me all of the information about what it means to test positive or negative. If you test positive you have an 87% chance of developing Breast Cancer and a 60%chance of developing ovarian cancer. Each of these statistics are purely that and vary from year to year give or take.
After the informational session and analyzing my mental stability I still decided to get tested. So weird to think a rinky dink little vial of blood can change your life for forever. Not just your life but your children and their children it is something that keeps on giving.
The Wait. Waiting was pretty easy since I work at the local high school as a coach for our color guard team. The waiting for once seemed the easier part. While waiting some days I would think it is going to be positive. I would go to the absolutely devastating place. How could I face this. Then the other days I would consider myself grateful that I am negative. That I really really escaped fate. In the end there would only be one outcome. As I got on the phone for the genetic testing results my heart sank. I just knew it.
I was/am BRCA1 positive.
Subscribe to:
Posts (Atom)