Lol I have obviously watched too much Nip Tuck and that is all I could envision the plastic surgeon saying to me as I sat in his "office" for the first time. It wasn't exactly a "Tell me what you don't like about yourself" kind of visit though. I was really looking forward to this one today, because I have been told that this was FINALLY where you get some answers and, viola!
Luckily it worked out where Joey was able to come to this appointment with me. We were both pretty excited. I was scheduled to go see the plastic surgeon that works with Dr. Grube, Dr. Fusi, today at 4:30. So we did the usual of dropping off the kiddos with great friends (THANKS BREEZY!!) and headed out a bit early since we didn't know where we were going. All of the previous appointments have been in New Haven at Yale which is a 50 minute drive, so this 35 minute drive was a bit of a break. Of course, me and my bad sense of direction, wrote down the directions wrong and we turned left off the freeway instead of right. I had been smart and wrote down the phone number and called before my husband was TOO angry with me. We got into the tiny 4 chaired waiting room and I filled out paperwork AGAIN, then waited for a few minutes before being lead into an exam type room. Sadly for Joey there was no taking off of my shirt and putting on a gown, haha.
Dr. Fusi came in and, obviously you can tell by his name, that he is foreign. He was tan skinned, older and very soft spoken with a slight accent. I felt at ease almost right away with the way he looked me in the eye and shook my hand. The first thing he asked me was how old I am and what makes me want a mastectomy . I explained the whole situation with cancer being extremely widespread in my family, how the gene was found and how it killed my mother. That was all the explanation he needed apparently because he went straight into what procedure I was looking at having done. My initial thought was THANK GOD for another doctor who is on board. I went on to describe how I was interested in having a nipple sparing mastectomy and immediate DIEP flap with possible implants. (I patted myself on the back for all this awesome medical jargon I have picked up :) Without even having to ask, he started to explain each procedure in extended detail.
I will try my best to explain, but I am not a professional! Basically what I am having done is they will make an incision somewhere near my nipple and scrape out all of the breast tissue in both breasts. They will leave my skin and nipple, but core out my nipple as there is a chance of cancer forming in the milk ducts as well. This will all be completed by the breast surgeon who will then turn me over to the plastic surgeon. The option I am still contemplating, is where they lift up my pectoral muscle and insert what is called an expander. Later on the expander can be filled slowly over time to accommodate an implant of the size I want. Next is the DIEP flap procedure. A DIEP flap is where they take a large portion of skin, fat and veins from your lower abdomen. It is similar to the process of having a tummy tuck and will leave me with a scar from hip bone to hip bone. The fat and veins will be taken off the skin and placed in each "hole" where the breast tissue was removed. Dr. Fusi will then attach the vein to a large vein in the middle of my chest so that this tissue/fat has blood supply. After I heal, the expanders will be filled slowly to stretch out the muscle enough and another surgery will take place to put in the permanent implants.
The reason that I chose to do both procedures instead of one or the other is to get as close to that "real" feeling as possible. After describing the surgery he went into time frames. He said the procedures all together are pretty extensive and will take an entire day to complete. I will then spend the night in the ICU and another 4 days in the hospital. After that I will be out of it for a good 10 days. Joey asked him about how much time he would need to take off of work and he suggested a good 3 weeks if not 4. I had heard from some other women about pain from muscle spasms and he said that was from a different procedure and I wont have many issues with the one I chose. I also asked about medication and he said that I will have narcotics, muscle relaxers and antibiotics. Oh joy.
Surprisingly, I am really looking forward to all of this, simply to get it over and done with. I obviously have spent a lot of time thinking about how much pain I'm going to be in, but try hard to not dwell on it. I'm not positive what is going on, but Joey's boat is going through some major testing/training blah blah blah that will require him to be there starting in the February time frame so we have chosen to have this done the first part of January. It isn't a for sure thing that he will get those 3/4 weeks off to care for me and the kids, but I'm really hoping so. The next step is to have a follow up with Dr. Grube my breast surgeon, and a finalizing appointment with Dr. Fusi. Then I will have a medically clearing appointment with X Rays and blood work etc followed by the actual surgery. I'm going to need as much support as possible this next month because I can foresee lots of highs and lows ahead of me. I'm about to have a life changing procedure done that most women don't have to worry about until they are twice my age....
Monday, November 29, 2010
Wednesday, November 24, 2010
LOUD noises!
I consider myself to be semi independent, but lately I have enjoyed the company and support of my husband being at my appointments. So this past week when I had to drive to New Haven alone, I was quite nervous. He wasn't able to get out of work being that my appointment was so early in the day, no biggie since I was just going for an MRI anyways. I dropped the kiddos off, hopped in the car all prettified and blasted the music on MY station. Two little facts I will share. I LOVE to get all pretty. Wear a cute pair of shoes, nice pair of jeans, cute top, perfect earrings and do my makeup just so. Its very rare that I get to do this, so when I do, I feel fantastic. Its especially helpful to feel pretty going to appointments lately, not quite sure why, but it is! Now on to blasting music. Joey isn't in control of a lot in our household, but anything electronic seems to be under his command when he is home. He drives us everywhere, so therefore the rule is that he gets to listen to his station, classic rock...puke. Ive gotten used to it and like some of the bands, but to me listening to the same songs over and over gets BORING! I like all the new stuff, and when I drive, I love to sing. Hayden is hilarious when he is in the car because he tells me to "be quiet mom!" and I keep on singing louder :)
So anyways, I drove the hour or so to my appointment at the Smilow Cancer Hospital and was making such great time (NO, I wasn't speeding....too much) I even stopped and got gas. I arrived at the hospital a good half hour early and filled out the normal paperwork. A younger nurse came and got me and I changed in this little curtained changing area into a very stylish opening in the front gown, comfy grey socks and paper hospital pants. They are smart and had lockers available for you to put your stuff in and you take the key and put it on your wrist. I was taken by this same nurse into a little room where she pricked my finger to test my kidney function and told me to wait to have my IV done. I asked her what the IV was for (this was my first MRI) and she looked at me like I was a total retard! She said so they could give me a contrast....that was it. OK then, thanks for that great explanation! I simply assumed the name was self explanatory, and took note that she was my new least favorite nurse.
Another nurse came in and asked me which arm I would like to use. I pointed out a spot in my right arm where they have always had great luck with a certain vein. She felt around and insisted on using another one that she could feel better. She put it in and missed it so she continued to move the needle around. I finally screamed out in pain when she hit a nerve, or what I'm assuming was a nerve, because intense pain shot up my arm. She then gave up and used the one I told her to in the first place and got it right away. Needless to say I was NOT happy. We know our bodies, they need to listen to us! The reason I mention this is because its been 4 days since my MRI and I am having pain in my arm where she hit the nerve. I'm really hoping she didn't do any damage!
So now I was dressed in my stylish garb with an IV sticking out of my arm, but I still felt pretty! I was lead into the room with the huge MRI machine. Ive seen them on TV, but they are much bigger in person. The best part came when I had to open the gown and lie face down on this little platform thing where my boobs fit into these little holes and my head was placed on a head rest that reminded me of a massage table, but not as comfortable I'm sure. I was given earplugs and earmuffs and told that it would be extremely loud. I had a ringer placed in my hands up by my head just in case I needed anything. I lay there completely relaxed as they started it up. The platform I was on started moving up and into the MRI machine. It was quiet for a few seconds and then all of these random loud beeps and bangs began. The whole process took about 2o minutes or so of me just laying there listening to those lovely loud noises. Towards the end, the nurse told me she was going to start giving me the contrast through the IV. It was cold at first going into my arm and then all of a sudden my tongue got REALLY hot! It was the strangest feeling. After she was done and said the images came out fine, I was taken out. I got up feeling really woosey and disorientated. My eyes were also pretty blurry. She took out my IV and told me I was all set to go change. Not quite the experience I expected, but not bad at all really. I changed back into my regular clothes and went back home, feeling accomplished that I survived this appointment by myself just fine. Im not positive if I will be getting results as this MRI wasnt for anything specific. The surgeon wanted it as a reference for when I have surgery. The next appointment will be this coming Monday the 29th with the plastic surgeon, im really looking forward to some answers and insight!
So anyways, I drove the hour or so to my appointment at the Smilow Cancer Hospital and was making such great time (NO, I wasn't speeding....too much) I even stopped and got gas. I arrived at the hospital a good half hour early and filled out the normal paperwork. A younger nurse came and got me and I changed in this little curtained changing area into a very stylish opening in the front gown, comfy grey socks and paper hospital pants. They are smart and had lockers available for you to put your stuff in and you take the key and put it on your wrist. I was taken by this same nurse into a little room where she pricked my finger to test my kidney function and told me to wait to have my IV done. I asked her what the IV was for (this was my first MRI) and she looked at me like I was a total retard! She said so they could give me a contrast....that was it. OK then, thanks for that great explanation! I simply assumed the name was self explanatory, and took note that she was my new least favorite nurse.
Another nurse came in and asked me which arm I would like to use. I pointed out a spot in my right arm where they have always had great luck with a certain vein. She felt around and insisted on using another one that she could feel better. She put it in and missed it so she continued to move the needle around. I finally screamed out in pain when she hit a nerve, or what I'm assuming was a nerve, because intense pain shot up my arm. She then gave up and used the one I told her to in the first place and got it right away. Needless to say I was NOT happy. We know our bodies, they need to listen to us! The reason I mention this is because its been 4 days since my MRI and I am having pain in my arm where she hit the nerve. I'm really hoping she didn't do any damage!
So now I was dressed in my stylish garb with an IV sticking out of my arm, but I still felt pretty! I was lead into the room with the huge MRI machine. Ive seen them on TV, but they are much bigger in person. The best part came when I had to open the gown and lie face down on this little platform thing where my boobs fit into these little holes and my head was placed on a head rest that reminded me of a massage table, but not as comfortable I'm sure. I was given earplugs and earmuffs and told that it would be extremely loud. I had a ringer placed in my hands up by my head just in case I needed anything. I lay there completely relaxed as they started it up. The platform I was on started moving up and into the MRI machine. It was quiet for a few seconds and then all of these random loud beeps and bangs began. The whole process took about 2o minutes or so of me just laying there listening to those lovely loud noises. Towards the end, the nurse told me she was going to start giving me the contrast through the IV. It was cold at first going into my arm and then all of a sudden my tongue got REALLY hot! It was the strangest feeling. After she was done and said the images came out fine, I was taken out. I got up feeling really woosey and disorientated. My eyes were also pretty blurry. She took out my IV and told me I was all set to go change. Not quite the experience I expected, but not bad at all really. I changed back into my regular clothes and went back home, feeling accomplished that I survived this appointment by myself just fine. Im not positive if I will be getting results as this MRI wasnt for anything specific. The surgeon wanted it as a reference for when I have surgery. The next appointment will be this coming Monday the 29th with the plastic surgeon, im really looking forward to some answers and insight!
Friday, November 19, 2010
In a funk...
From the moment I found out that I was positive, I promised myself I wouldn't let it affect my life. I don't HAVE cancer so there really isn't anything to dwell on, but for some reason these past couple of weeks I have been in a major funk. I haven't been working out like I was before, Ive not been eating like I should and I have been sleeping a lot without feeling rested. I'm also losing my hair in handfuls. Its all over everything in the house and I can pull out clumps when I'm washing it in the shower. I obviously have a lot on my mind, but I refuse to let the stress of it all overcome me. I started this blog partly because it helps to write down my feelings so I don't keep going over and over things in my head. I wouldn't call me depressed or anything, just in need of a major boost. I guess it doesn't help that I have been staying in the house with the kids a lot lately. I have been extremely whiny and complaining to my husband about everything, really. I honestly don't understand how he has been so good to me, when I find that I even get annoyed at myself. I really didn't even want to admit all of this in writing, but realized its a healthy part of this whole process. I'm going to have ups and downs and that is normal. A lot of what helps is the support that I am getting from all of my family and friends. You have all made me see that it does take courage and strength to go through this.
Today is the day my sister finds out if she has the gene as well. I'm so nervous for her. I have thought about it a great deal and if there was a choice between the two of us having it, I would wish it upon myself in a heartbeat. She is already a year away from when mom was diagnosed and hasn't yet gone through the joys of having children or breastfeeding. She works full time to support herself and her husband, so if she had to go through surgery she would be out of work for several weeks. It makes me even more thankful that we have such amazing health coverage and that Joey's command will let him take leave to take care of me while I am healing. The military is not a great life a majority of the time, but it definitely has its perks.
So please keep my sister in your prayers, pray that she is one of the negatives.
UPDATE:
Someone pointed out to me how I hadnt posted or talked about my sister's results. She had some issues with insurance and paperwork so they delayed her results a couple weeks further, but she did finally get them. She also, has tested positive for this evil gene mutation. We live pretty much across the country from one another so dont get a chance to talk often. Its really hard because out of everyone, I feel we could support each other the best. ESPECIALLY since ive now gone through the surgery. She has MANY medical issues that are not in her favor of having children at the moment and she really wanted them before having surgery. Its just not going to happen. Currently she is looking for a team of doctors. She lives in a small town in Washington state and has to travel to our home town of Spokane, or even better, to Seattle, to find an experienced team to do her prophylactic bilateral mastectomy. I can tell she is scared and nervous, obvious emotions that come with this whole ordeal. I will post a link to her blog so you may follow her journey as well. She is hoping to get her surgery done within the next few months. Im very proud of her because she has stopped smoking for about a month now :) A HUGE step in the right direction!
Today is the day my sister finds out if she has the gene as well. I'm so nervous for her. I have thought about it a great deal and if there was a choice between the two of us having it, I would wish it upon myself in a heartbeat. She is already a year away from when mom was diagnosed and hasn't yet gone through the joys of having children or breastfeeding. She works full time to support herself and her husband, so if she had to go through surgery she would be out of work for several weeks. It makes me even more thankful that we have such amazing health coverage and that Joey's command will let him take leave to take care of me while I am healing. The military is not a great life a majority of the time, but it definitely has its perks.
So please keep my sister in your prayers, pray that she is one of the negatives.
UPDATE:
Someone pointed out to me how I hadnt posted or talked about my sister's results. She had some issues with insurance and paperwork so they delayed her results a couple weeks further, but she did finally get them. She also, has tested positive for this evil gene mutation. We live pretty much across the country from one another so dont get a chance to talk often. Its really hard because out of everyone, I feel we could support each other the best. ESPECIALLY since ive now gone through the surgery. She has MANY medical issues that are not in her favor of having children at the moment and she really wanted them before having surgery. Its just not going to happen. Currently she is looking for a team of doctors. She lives in a small town in Washington state and has to travel to our home town of Spokane, or even better, to Seattle, to find an experienced team to do her prophylactic bilateral mastectomy. I can tell she is scared and nervous, obvious emotions that come with this whole ordeal. I will post a link to her blog so you may follow her journey as well. She is hoping to get her surgery done within the next few months. Im very proud of her because she has stopped smoking for about a month now :) A HUGE step in the right direction!
Wednesday, November 17, 2010
The Boobie Surgeon
I was really excited about my appointment yesterday. When I heard that the next step was to see the breast surgeon, it seemed like things were starting to roll and I was going to get some answers. Not so much.
Kora had a doctor appointment bright and early yesterday morning. Getting the kids dressed, fed and out of the house by 7:45 is always something to be proud of. We followed the usual routine, check in, watch some toons, vitals, get seen by the doc (poop), get a couple shots and leave. Kora has a thing for pooping in her diaper right before the doctor comes in to do her exam...lovely. We learned everything we already knew, she is a short, chubby, happy, and smart little monkey :) We came home, cleaned, ate lunch and took Hayden to school. Kora napped while I filled out some new patient paperwork for the Cancer Center online. Isn't it nifty how nowadays we can do all that paperwork crap ahead of time? I love it. I don't have to arrive early to my appointments and sit there filling out paper after paper with the same name, birth date, address etc etc. Its quite convenient.
I swear during this whole thing I feel more and more like an actual mutant. I was in the waiting room of the Breast Center at Yale and the nurse came out and called my name; I could see a look of surprise on her face when I stood up. She even checked my patient bracelet to make sure she "had the right person". I'm sure that is what the bracelets are for, but I HONESTLY think she wanted to double check. I mean, I understand. Here I was a 25 year old, in a waiting room with all these women at least in their 40's and 50's. It does make me wonder how uncommon this is though. So she lead us back into a small cozy room with nice chairs and a table with some pamphlets. She left to get the vital machine and checked my temp, blood pressure and asked a few questions about why I was there. We were then lead into a normal exam room where I changed from the waist up into a gown. This, of course, is my husband's favorite part ;) A doctor that works with Dr. Grube (my breast surgeon) came in and introduced herself and started asking the same questions about my health and family history that Ive gone over a million times. I was surprised at how shocked she was. She literally told me that my family history is so tragic she felt like leaning over and giving me a hug. I told her that for me, its normal.
She started to give me an exam and talked to me about breast feeding and my kids and how she also breastfed hers, but her husband was a stay at home dad. I couldn't help, but laugh at the thought of Joey being a stay at home dad. I'm pretty sure he is happy to leave the craziness and go to work most days. Anyways, so she said she didn't find any lumps or anything out of the ordinary, which is always good to hear. We talked over my options and I was proud that I knew the lingo, but she ensured me there wasn't going to be a quiz :) She explained to me a bit about the different types of cancers and something about estrogen and triple negative and some other stuff I didn't quite understand, but doesn't pertain to me anyways. I flat out told her that I didn't have interest in doing any sort of prevention other than prophylactic mastectomy. There are other options like constant mammograms, MRIs, breast exams, medications. For me, honestly, I'm not about to wait around to get the cancer and then do something about it. If I did wait until they found something, I would then have to get a mastectomy AND go through Chemo...NO THANKS. The only real option for me, is to take the babies off.
I had to wait a bit after she left for the surgeon, Dr. Grube, to come in. Joey was pretty bored and told me a Chuck Norris joke that I couldn't stop laughing over, its too inappropriate to repeat, but it helped to lighten my mood. Dr. Grube went over what the previous doctor had jotted down about my history and pointed out how aggressive this form of cancer is. She also gave me an exam and started talking about some options I have for surgery. The best thing about the whole appointment was seeing pictures of her work. I had seen some pictures before, but not many. They looked pretty dang good if you ask me! She talked with me about the different ways they take out the breast tissue and how they can save the nipple or take it and rebuild a new one. She made sure to inform me that once you remove all of this tissue and have reconstruction, feeling will be almost gone completely. For most women this is the main reason they don't have the surgery done. To me, its just a small price I'm going to pay to keep my life and see my children grow.
In closing she said she would set up appointments for me to have an MRI (not quite sure why) and to see a plastic surgeon to further go over the reconstructive part of my surgery. I'm assuming that is where I will get more answers on the surgery itself. After those two appointments there will be a medically clearing appointment to clear me for surgery and then on to the big event! The time frame we are looking at is doing my surgery around January or so. Its quite amazing at how quick they are about all of this, it helps me in keeping with my decisions, to know that they are on board.
Kora had a doctor appointment bright and early yesterday morning. Getting the kids dressed, fed and out of the house by 7:45 is always something to be proud of. We followed the usual routine, check in, watch some toons, vitals, get seen by the doc (poop), get a couple shots and leave. Kora has a thing for pooping in her diaper right before the doctor comes in to do her exam...lovely. We learned everything we already knew, she is a short, chubby, happy, and smart little monkey :) We came home, cleaned, ate lunch and took Hayden to school. Kora napped while I filled out some new patient paperwork for the Cancer Center online. Isn't it nifty how nowadays we can do all that paperwork crap ahead of time? I love it. I don't have to arrive early to my appointments and sit there filling out paper after paper with the same name, birth date, address etc etc. Its quite convenient.
I swear during this whole thing I feel more and more like an actual mutant. I was in the waiting room of the Breast Center at Yale and the nurse came out and called my name; I could see a look of surprise on her face when I stood up. She even checked my patient bracelet to make sure she "had the right person". I'm sure that is what the bracelets are for, but I HONESTLY think she wanted to double check. I mean, I understand. Here I was a 25 year old, in a waiting room with all these women at least in their 40's and 50's. It does make me wonder how uncommon this is though. So she lead us back into a small cozy room with nice chairs and a table with some pamphlets. She left to get the vital machine and checked my temp, blood pressure and asked a few questions about why I was there. We were then lead into a normal exam room where I changed from the waist up into a gown. This, of course, is my husband's favorite part ;) A doctor that works with Dr. Grube (my breast surgeon) came in and introduced herself and started asking the same questions about my health and family history that Ive gone over a million times. I was surprised at how shocked she was. She literally told me that my family history is so tragic she felt like leaning over and giving me a hug. I told her that for me, its normal.
She started to give me an exam and talked to me about breast feeding and my kids and how she also breastfed hers, but her husband was a stay at home dad. I couldn't help, but laugh at the thought of Joey being a stay at home dad. I'm pretty sure he is happy to leave the craziness and go to work most days. Anyways, so she said she didn't find any lumps or anything out of the ordinary, which is always good to hear. We talked over my options and I was proud that I knew the lingo, but she ensured me there wasn't going to be a quiz :) She explained to me a bit about the different types of cancers and something about estrogen and triple negative and some other stuff I didn't quite understand, but doesn't pertain to me anyways. I flat out told her that I didn't have interest in doing any sort of prevention other than prophylactic mastectomy. There are other options like constant mammograms, MRIs, breast exams, medications. For me, honestly, I'm not about to wait around to get the cancer and then do something about it. If I did wait until they found something, I would then have to get a mastectomy AND go through Chemo...NO THANKS. The only real option for me, is to take the babies off.
I had to wait a bit after she left for the surgeon, Dr. Grube, to come in. Joey was pretty bored and told me a Chuck Norris joke that I couldn't stop laughing over, its too inappropriate to repeat, but it helped to lighten my mood. Dr. Grube went over what the previous doctor had jotted down about my history and pointed out how aggressive this form of cancer is. She also gave me an exam and started talking about some options I have for surgery. The best thing about the whole appointment was seeing pictures of her work. I had seen some pictures before, but not many. They looked pretty dang good if you ask me! She talked with me about the different ways they take out the breast tissue and how they can save the nipple or take it and rebuild a new one. She made sure to inform me that once you remove all of this tissue and have reconstruction, feeling will be almost gone completely. For most women this is the main reason they don't have the surgery done. To me, its just a small price I'm going to pay to keep my life and see my children grow.
In closing she said she would set up appointments for me to have an MRI (not quite sure why) and to see a plastic surgeon to further go over the reconstructive part of my surgery. I'm assuming that is where I will get more answers on the surgery itself. After those two appointments there will be a medically clearing appointment to clear me for surgery and then on to the big event! The time frame we are looking at is doing my surgery around January or so. Its quite amazing at how quick they are about all of this, it helps me in keeping with my decisions, to know that they are on board.
Tuesday, November 16, 2010
And the results are in...
Those 3 weeks of waiting for the results were torture. I tried hard not to think about it, but couldnt help myself. My sister pointed out to me the other day that we have been waiting for these results for almost 14 years. To finally know, is HUGE. Joey was amazing through it all. He said he would be happy either way, which confused me at first. Why in the hell would he be happy if I was told that my risk of getting cancer was insanely high? He simply explained, because then we will know, do something about it, and that will be that. OH, and he added he was excited for me to get new boobs and a possible tummy tuck out of the deal....MEN! His positive attitude and humor really did help to keep my spirits up though.
Once again Joey was able to get the day off thanks to his command. I had butterflies in my stomach from the time I woke up that morning. We drove the 45 minutes to Yale after dropping the kiddos off and walked hand in hand back into that building where I would learn my fate. We sat in the waiting room for no more than a couple minutes when Rachel came and got us and took us into another small conference room. She seemed cheery, so of course, I was thinking either A) she was going to tell me I was negative or B) she was trying to stay positive for my sake. This is her job though, telling people their results, and im sure she has done it way too many times. We sat down at the table and she sat acrossed from us. I was shaking, but competly ready. I cant remember exactly what was going through my head, but I thought she might drag it out. NOPE. She said it flat out. So, Gina, we did indeed find that you carry the same genetic mutation that was found in your family. You are BRCA1 positive. I smiled and nodded, I didnt know what else to do. I suddenly felt a tunnel of darkness crowding around me and she sat there and smiled knowingly. I started to cry. Not alot of tears, but those ones that fill up your eyes from immense emotion that you simply cant fight back. I remember Joey grabbing my hand and squeezing it nervously. He asked me if I was alright, and I fought the urge to yell at him and say NO im NOT alright. The first thoughts that came into my head were thoughts of my children, and the now possibility that I gave it to them. I thought of Kora having to go through the same feelings, and the fact that Hayden could now give it to his children. BUT I tried to remember how far research has come from the time my mom was diagnosed until now, and how much more knowledgable we will be 20 years from now.
Then came a flurry of information. Rachel started handing me pamplets and a book with pictures of women who have had masectomys with reconstructive surgery. She told me about a group called FORCE, which stands for "Facing Our Risk of Cancer Empowered". Also another group called Bright Pink for high risk young women. I was also asked if I would like to be included in an email chain of women who have either been through my situation or have had cancer. I just sat there and tried to take it all in and nod and fight back more tears. I dont think I have EVER felt that overwhelmed in my entire life. Joey sat next to me, squeezing my hand and shifting uncomfortably in his seat. He seemed perfectly fine, but he likes to put on that face whenever things get uncomfortable. The next step was to talk about going to see a breast surgeon and she wrote down a couple names she reccommended there at Yale. It finally was all so real, and basicly I felt like I now had a stamp on my forehead that read BRCA1 positive. I was in fact a newly diagnosed HOT PINK MUTANT.
Once again Joey was able to get the day off thanks to his command. I had butterflies in my stomach from the time I woke up that morning. We drove the 45 minutes to Yale after dropping the kiddos off and walked hand in hand back into that building where I would learn my fate. We sat in the waiting room for no more than a couple minutes when Rachel came and got us and took us into another small conference room. She seemed cheery, so of course, I was thinking either A) she was going to tell me I was negative or B) she was trying to stay positive for my sake. This is her job though, telling people their results, and im sure she has done it way too many times. We sat down at the table and she sat acrossed from us. I was shaking, but competly ready. I cant remember exactly what was going through my head, but I thought she might drag it out. NOPE. She said it flat out. So, Gina, we did indeed find that you carry the same genetic mutation that was found in your family. You are BRCA1 positive. I smiled and nodded, I didnt know what else to do. I suddenly felt a tunnel of darkness crowding around me and she sat there and smiled knowingly. I started to cry. Not alot of tears, but those ones that fill up your eyes from immense emotion that you simply cant fight back. I remember Joey grabbing my hand and squeezing it nervously. He asked me if I was alright, and I fought the urge to yell at him and say NO im NOT alright. The first thoughts that came into my head were thoughts of my children, and the now possibility that I gave it to them. I thought of Kora having to go through the same feelings, and the fact that Hayden could now give it to his children. BUT I tried to remember how far research has come from the time my mom was diagnosed until now, and how much more knowledgable we will be 20 years from now.
Then came a flurry of information. Rachel started handing me pamplets and a book with pictures of women who have had masectomys with reconstructive surgery. She told me about a group called FORCE, which stands for "Facing Our Risk of Cancer Empowered". Also another group called Bright Pink for high risk young women. I was also asked if I would like to be included in an email chain of women who have either been through my situation or have had cancer. I just sat there and tried to take it all in and nod and fight back more tears. I dont think I have EVER felt that overwhelmed in my entire life. Joey sat next to me, squeezing my hand and shifting uncomfortably in his seat. He seemed perfectly fine, but he likes to put on that face whenever things get uncomfortable. The next step was to talk about going to see a breast surgeon and she wrote down a couple names she reccommended there at Yale. It finally was all so real, and basicly I felt like I now had a stamp on my forehead that read BRCA1 positive. I was in fact a newly diagnosed HOT PINK MUTANT.
Monday, November 15, 2010
What is a Hot Pink Mutant Anyways??
So there IS a reason I entitled my blog "The Hot Pink Mutant". I will start back at my sisters wedding when I was told by family that there was this thing called a "gene test". I was obviously intrigued and had NO idea what the heck it was, but they were excited, so I was too! I later learned that one of my second cousins who had cancer, was tested to see if the cancer was caused by a gene mutation in our family. The tests came back positive for BRCA1. This stands for breast cancer and there is either type 1 or 2.
This past summer when we were on vacation back home, I was able to talk with my mom's sister, Susan, about it further. She had ended up testing positive as well, and had preventative surgery done that she was very open to talking about. I actually got excited to finally know that there were ways to test and even prevent having the same fate as my mother. Knowing that Joey and I are done having kids I was ready to make some serious decisions. Was I ready to get tested? What would I do if I was positive? What did this mean for my family?
I decided that I DID want to get tested and as soon as possible. I saw my regular doctor at the Navy clinic and she referred me out to a Cancer Genetic Councelor at Yale in New Haven, CT. I called and they were very quick to help me get the process started. They asked me a few questions, like had the test been done before. This was important because an initial test has to be done on a member of the family, most likely someone who already has cancer, so they can locate the gene. The initial testing costs thousands of dollars and family members after that only pay about $450. I got a copy of my cousins results and emailed them to her. She set up my initial appointment for the 4th of October and a results appointment for the 25th of October. I couldnt believe that they were so helpful and it all was going to happen so fast. When I got off the phone after making the appointments I was shaking and couldnt stop crying. I wasnt scared, just overwhelmed that I was able to DO something to know my fate. I called and talked to my Aunt Susan who told me that yes, it is scary, but it is also empowering to KNOW.
October 4th rolled around and I left my kids with my good friend Sara. Joey was able to get the day off of work to go with me. I thank GOD that the command is good about family and these kinds of situations. We found the place easily and walked hand in hand into the building. The waiting room was small and quiet and the nurse greeted me with a friendly, knowing smile. We were then lead into a small conference type room with my genetic councelor Rachel. I was feeling really good and nervously excited. She started by going over my entire family tree and history of cancer. I have a pretty big family because my mom has 3 sisters and 2 brothers and I believe my dad has 2 sisters and 3 brothers (im not as close with them).
The most important part for me, was when she explained cancer and this gene I had heard so much about. Im not an expert on it, but what I understood is that we get some genes from our mom and some from our dad. There was a 50/50 chance that my mom had given the gene mutation to me. It is located on a certain strand so they know where to look. Basicly, what this mutation does, is it causes a protein made to fight cancer cells, to not form correctly. This in turn leaves you more suseptible to cancer. This certain mutation is responsible for breast and ovarian cancers. I dont know the percentages off hand, but basicly anyone that tests positive for this mutation BRCA1 or 2, has an extremely higher chance of getting cancer in their liftetime. Somewhere around 55-87%. I will post the link to the sites I have been looking at when I figure out how to work this whole blog thing better!
After learning all of this, she then discussed what my options would be if I was positive and asked if I had decided what I would do, if I indeed was. I hadnt thoroughly thought everything over, as I didnt want to freak myself out, but I knew what my options were. I most likely was going to follow in my aunts footsteps and get a prophylactic mastectomy, a preventative removal of healthy breast tissue. She was surprised at my knowledge and I even surprised myself at how easy it was to SAY. The easiest part of the appointment was when I got my blood drawn, it was so strange that it was that simple. THEN the waiting came, I had to wait 3 weeks before getting my results. I was more anxious about it than anything, I was just ready to finally know. Was I a hot pink mutant?
This past summer when we were on vacation back home, I was able to talk with my mom's sister, Susan, about it further. She had ended up testing positive as well, and had preventative surgery done that she was very open to talking about. I actually got excited to finally know that there were ways to test and even prevent having the same fate as my mother. Knowing that Joey and I are done having kids I was ready to make some serious decisions. Was I ready to get tested? What would I do if I was positive? What did this mean for my family?
I decided that I DID want to get tested and as soon as possible. I saw my regular doctor at the Navy clinic and she referred me out to a Cancer Genetic Councelor at Yale in New Haven, CT. I called and they were very quick to help me get the process started. They asked me a few questions, like had the test been done before. This was important because an initial test has to be done on a member of the family, most likely someone who already has cancer, so they can locate the gene. The initial testing costs thousands of dollars and family members after that only pay about $450. I got a copy of my cousins results and emailed them to her. She set up my initial appointment for the 4th of October and a results appointment for the 25th of October. I couldnt believe that they were so helpful and it all was going to happen so fast. When I got off the phone after making the appointments I was shaking and couldnt stop crying. I wasnt scared, just overwhelmed that I was able to DO something to know my fate. I called and talked to my Aunt Susan who told me that yes, it is scary, but it is also empowering to KNOW.
October 4th rolled around and I left my kids with my good friend Sara. Joey was able to get the day off of work to go with me. I thank GOD that the command is good about family and these kinds of situations. We found the place easily and walked hand in hand into the building. The waiting room was small and quiet and the nurse greeted me with a friendly, knowing smile. We were then lead into a small conference type room with my genetic councelor Rachel. I was feeling really good and nervously excited. She started by going over my entire family tree and history of cancer. I have a pretty big family because my mom has 3 sisters and 2 brothers and I believe my dad has 2 sisters and 3 brothers (im not as close with them).
The most important part for me, was when she explained cancer and this gene I had heard so much about. Im not an expert on it, but what I understood is that we get some genes from our mom and some from our dad. There was a 50/50 chance that my mom had given the gene mutation to me. It is located on a certain strand so they know where to look. Basicly, what this mutation does, is it causes a protein made to fight cancer cells, to not form correctly. This in turn leaves you more suseptible to cancer. This certain mutation is responsible for breast and ovarian cancers. I dont know the percentages off hand, but basicly anyone that tests positive for this mutation BRCA1 or 2, has an extremely higher chance of getting cancer in their liftetime. Somewhere around 55-87%. I will post the link to the sites I have been looking at when I figure out how to work this whole blog thing better!
After learning all of this, she then discussed what my options would be if I was positive and asked if I had decided what I would do, if I indeed was. I hadnt thoroughly thought everything over, as I didnt want to freak myself out, but I knew what my options were. I most likely was going to follow in my aunts footsteps and get a prophylactic mastectomy, a preventative removal of healthy breast tissue. She was surprised at my knowledge and I even surprised myself at how easy it was to SAY. The easiest part of the appointment was when I got my blood drawn, it was so strange that it was that simple. THEN the waiting came, I had to wait 3 weeks before getting my results. I was more anxious about it than anything, I was just ready to finally know. Was I a hot pink mutant?
Who Am I?
I figured I might want to add in here a little bit about myself, because after all, this is a blog about me :) My name is Gina Marie Torrisi. I am currently 25 years old and living in Connecticut with my husband, Joey, and my two amazing kids Hayden (4) and Kora (18 months). I was born and raised in Spokane, Washington by my mother Geri, dad Ron, and step-dad (not a big fan of that term) Randy. I have an older sister, Trisha and a younger brother, RJ. My parents divorced when my sister and I were little and my mom married Randy. They then had RJ.
I lost my mother when I was 12 to breast cancer. She was 31 when diagnosed and died at 38. Her fight has in turn, spurred me to write this blog. (see: Where to Start...)
I met my now husband, while working at Arby's my senior year of high school. We dated until I left for Air Force boot camp, when he proposed to me at my graduation. He joined the Navy and we were married that following May. We became pregnant with Hayden that September and I chose to leave the Air Force and start a family with Joey in South Carolina. During his 6 years in the Navy, we have lived in South Carolina, bought a house in Suffolk Va where we had Kora, and were most recently transferred with Joey's submarine, up here to Groton CT. Navy life has its ups and downs. Lately the huge UP has been healthcare coverage!
In the last few years I have really started to discover my passion for food and EVERTHING to do with it. I started making cakes out of the blue, about a year and a half ago. They make me happy. Everything about them, from baking, to creating the details, to assembling, and the best part, seeing the person's face when they get their cake. I could write an entire blog on just cake, but I will save that for when I have my own bakery someday :) I love to make people happy with food. I have a TON of cookbooks and could browse recipes on the internet for hours. Its an obsession, really.
I have also most recently become very close with Jillian Michaels...we are like this *crosses fingers*. I cannot stand carrying around this "baby weight" so I have been battling getting it off for a while now. I have my genes to thank for that! Well, and my love for food :) Hopefully being in shape will help make things easier on this journey!
That is me in a nutshell, im sure you will learn more about me along the way. I have the most amazing and supportive extended family and group of friends I could ever ask for. Now im hoping this blog will help to spread my story and spur other women to become proactive as well!
I lost my mother when I was 12 to breast cancer. She was 31 when diagnosed and died at 38. Her fight has in turn, spurred me to write this blog. (see: Where to Start...)
I met my now husband, while working at Arby's my senior year of high school. We dated until I left for Air Force boot camp, when he proposed to me at my graduation. He joined the Navy and we were married that following May. We became pregnant with Hayden that September and I chose to leave the Air Force and start a family with Joey in South Carolina. During his 6 years in the Navy, we have lived in South Carolina, bought a house in Suffolk Va where we had Kora, and were most recently transferred with Joey's submarine, up here to Groton CT. Navy life has its ups and downs. Lately the huge UP has been healthcare coverage!
In the last few years I have really started to discover my passion for food and EVERTHING to do with it. I started making cakes out of the blue, about a year and a half ago. They make me happy. Everything about them, from baking, to creating the details, to assembling, and the best part, seeing the person's face when they get their cake. I could write an entire blog on just cake, but I will save that for when I have my own bakery someday :) I love to make people happy with food. I have a TON of cookbooks and could browse recipes on the internet for hours. Its an obsession, really.
I have also most recently become very close with Jillian Michaels...we are like this *crosses fingers*. I cannot stand carrying around this "baby weight" so I have been battling getting it off for a while now. I have my genes to thank for that! Well, and my love for food :) Hopefully being in shape will help make things easier on this journey!
That is me in a nutshell, im sure you will learn more about me along the way. I have the most amazing and supportive extended family and group of friends I could ever ask for. Now im hoping this blog will help to spread my story and spur other women to become proactive as well!
Where to start.....
I wanted to write this blog to allow family and friends to follow me on my new journey as a "previvor". There is nowhere else to start, but from the beginning. It all goes back to a single moment, a very long time ago. I was about 6 years old, standing in the kitchen with my sister, when our mother explained to us that she had been diagnosed with breast cancer. Of course I could tell she was upset, but had no idea what would follow in the months and years to come.
I remember bits and pieces, but there are things that stick out in my mind the most. I remember when she was on chemo and started losing her hair, I was the one who she let shave her head. I remember her always being sick, but having a smile on her face. Being a hairdresser she could rock a wig or hat like no ones business! She made the whole thing seem like no big deal, or at least to me it didnt. She ended up having her left breast removed and I still remember going to fetch her "boob" that she would stick in her bra to make her look normal.
When she was in remission, she became pregnant with my little brother RJ. I will never forget her happiness in the fact that she was able to give my step-dad, Randy, a son. Unfortunatly during her pregnancy they learned that the cancer had come back, and this time it was in the bone marrow in her spine. They moved a hospital bed into our living room where she remained for the rest of the pregnancy because of the pain caused when she moved. After she had RJ, we took a trip to Ocean Shores and to Seattle where we found an apartment for while my mom was going through treatment at Fred Hutchison Cancer Research Center.
Most things are blurry after that. I remember people would go over and help care for her when Randy couldnt get off of work. We had so much support from family and friends. People from church would bring us meals and watch my sister, brother and I. Once I was able to go over to Seattle by bus and take care of my mom. It was pretty rough. She was sick with a cold at the time, which for someone with such a low immune system, is a very scary thing. I loved spending the time with my her all to myself. I cooked for her, we would take walks to her doctor appointments, and she let me rollerblade in the courtyard of the apartment where I met other kids with moms going through treatment as well. I was only 10/11 at the time so I look back to how oblivious I was to the intensity of it all. Im not clear on the whole process, but I remember mom having to go through a first and then second bone marrow transplant.
This now put me at 12 years old and in 6th grade. My mom was finally in remission and was back home for good. Things were getting back to normal when I remember her in bed for days in extreme pain from her stomach. At first it was just her gall bladder and they ended up removing it, but when the pain continued, they knew something else was wrong. Then came the moment that forever changed my life. I came home from school and went into my mom's bedroom to see her. She called me onto the bed with her and held me tight. She was crying. I remember I started to cry too, I just knew. She explained to me that the cancer had spread to her liver, and at that point there was nothing doctors could do. She somehow turned it into a positive and explained to me that her dying would provide money so that I could finally have braces to fix my teeth. She was excited! I will never forget that moment and how it felt to be in her arms as we cried about losing each other.
The doctors said she had about a month left before the cancer would take over. We all sat in the living room a few days later as they explained everything to us. She wanted to be at home, so they set up a make shift hospital room in the addition to our home that was supposed to be her beauty salon someday. They explained how Hospice would be there to help care for her. The most amazing thing about my mother was her selflessness. Im sure she was scared amongst a million other emotions, but she spent the following days inviting family and friends over to take her posessions. Clothes, jewelry, anything they had given to her, she gave back to them. Now that I have children I cannot even fathom to know how she felt about leaving my brother, who at the time was 2 years old. We have pictures of him sitting on the bed with her, both of them bald and smiling. The couple of weeks following are a blur of sounds and smells. Of course I sometimes wish I could erase the memories of my mom's quickly fading body out of my head. But if I did that, I would forget the moment where she called me to her side and told me of a dream she had the night before. She explained that angels had come to her and told her that everything was going to be ok, she was soon going to be with God and he would take care of her. This was so immensly comforting. I was young, but understood where my mom was going after she left us, and most importantly, knew she would no longer be in pain.
On the morning of the 21st of May 1997, I could hear Randy on the phone early in the morning. She had left us at 3 am to go be with those angels. I remember going in and seeing her lifeless body and kissing her hand. Strangely I dont remember crying, just feeling numb. I even went to school that day. The night before we had said our final goodbyes, because we knew the cancer had completly taken over. She couldnt respond, but we knew she could hear us. Looking back I remember lying in bed crying myself to sleep at night. Sad that my mom would never get to have her dream of opening her own salon. Sad that she wouldnt get to see RJ grow. Sad that she didnt get to see me evolve from a little girl into a women. Now when I think of her, my sadness has subsided into greatfullness. She was such an amazingly strong women, I honestly believe in those short 12 years she was able to mold me into who I am today. She has given me the strength and courage to be proactive not only for myself, but for my family and friends.
I remember bits and pieces, but there are things that stick out in my mind the most. I remember when she was on chemo and started losing her hair, I was the one who she let shave her head. I remember her always being sick, but having a smile on her face. Being a hairdresser she could rock a wig or hat like no ones business! She made the whole thing seem like no big deal, or at least to me it didnt. She ended up having her left breast removed and I still remember going to fetch her "boob" that she would stick in her bra to make her look normal.
When she was in remission, she became pregnant with my little brother RJ. I will never forget her happiness in the fact that she was able to give my step-dad, Randy, a son. Unfortunatly during her pregnancy they learned that the cancer had come back, and this time it was in the bone marrow in her spine. They moved a hospital bed into our living room where she remained for the rest of the pregnancy because of the pain caused when she moved. After she had RJ, we took a trip to Ocean Shores and to Seattle where we found an apartment for while my mom was going through treatment at Fred Hutchison Cancer Research Center.
Most things are blurry after that. I remember people would go over and help care for her when Randy couldnt get off of work. We had so much support from family and friends. People from church would bring us meals and watch my sister, brother and I. Once I was able to go over to Seattle by bus and take care of my mom. It was pretty rough. She was sick with a cold at the time, which for someone with such a low immune system, is a very scary thing. I loved spending the time with my her all to myself. I cooked for her, we would take walks to her doctor appointments, and she let me rollerblade in the courtyard of the apartment where I met other kids with moms going through treatment as well. I was only 10/11 at the time so I look back to how oblivious I was to the intensity of it all. Im not clear on the whole process, but I remember mom having to go through a first and then second bone marrow transplant.
This now put me at 12 years old and in 6th grade. My mom was finally in remission and was back home for good. Things were getting back to normal when I remember her in bed for days in extreme pain from her stomach. At first it was just her gall bladder and they ended up removing it, but when the pain continued, they knew something else was wrong. Then came the moment that forever changed my life. I came home from school and went into my mom's bedroom to see her. She called me onto the bed with her and held me tight. She was crying. I remember I started to cry too, I just knew. She explained to me that the cancer had spread to her liver, and at that point there was nothing doctors could do. She somehow turned it into a positive and explained to me that her dying would provide money so that I could finally have braces to fix my teeth. She was excited! I will never forget that moment and how it felt to be in her arms as we cried about losing each other.
The doctors said she had about a month left before the cancer would take over. We all sat in the living room a few days later as they explained everything to us. She wanted to be at home, so they set up a make shift hospital room in the addition to our home that was supposed to be her beauty salon someday. They explained how Hospice would be there to help care for her. The most amazing thing about my mother was her selflessness. Im sure she was scared amongst a million other emotions, but she spent the following days inviting family and friends over to take her posessions. Clothes, jewelry, anything they had given to her, she gave back to them. Now that I have children I cannot even fathom to know how she felt about leaving my brother, who at the time was 2 years old. We have pictures of him sitting on the bed with her, both of them bald and smiling. The couple of weeks following are a blur of sounds and smells. Of course I sometimes wish I could erase the memories of my mom's quickly fading body out of my head. But if I did that, I would forget the moment where she called me to her side and told me of a dream she had the night before. She explained that angels had come to her and told her that everything was going to be ok, she was soon going to be with God and he would take care of her. This was so immensly comforting. I was young, but understood where my mom was going after she left us, and most importantly, knew she would no longer be in pain.
On the morning of the 21st of May 1997, I could hear Randy on the phone early in the morning. She had left us at 3 am to go be with those angels. I remember going in and seeing her lifeless body and kissing her hand. Strangely I dont remember crying, just feeling numb. I even went to school that day. The night before we had said our final goodbyes, because we knew the cancer had completly taken over. She couldnt respond, but we knew she could hear us. Looking back I remember lying in bed crying myself to sleep at night. Sad that my mom would never get to have her dream of opening her own salon. Sad that she wouldnt get to see RJ grow. Sad that she didnt get to see me evolve from a little girl into a women. Now when I think of her, my sadness has subsided into greatfullness. She was such an amazingly strong women, I honestly believe in those short 12 years she was able to mold me into who I am today. She has given me the strength and courage to be proactive not only for myself, but for my family and friends.
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