After all my appointments on Wednesday, Thursday was my surgical port placement. Earlier in the week, my family and Dr. Mikkelson and I decided that with all of the treatment that I would be undergoing in the near future, a mediport would be a good idea. A mediport is a device that is implanted in my chest directly under the skin that can be accessed by needles with little pain. Mediports are typically used when someone like me doesn't have very good veins.
So my mother, father and I arrive at the hospital that morning for the surgery, but first we have to go get an Echocardiogram done on my heart. Chemotherapy is very stressful on your body, and thus can sometimes damage your heart. The Echo was done to get a baseline, so that in the future, any issues with my heart can be compared to the initial test. The Echo is basically an ultrasound of your heart. Unfortunately, the tech who was doing the test couldn't get a great picture from a certain angle, so she had to call in reinforcements. The reinforcements consisted of a woman that was about 5'2". I thought in the back of my head, what is she going to do that the giant next to me can't do? Well as she was digging in to find my heart, I wouldn't doubt that they were also able to get a picture of my brain with how hard she was pressing the ultrasound wand into my chest. If my breast wasn't already inflamed because of the cancer, it would have probably been black and blue the next day!
After the Echo, I was sent up to day surgery where I would wait until my surgery, and also have an EKG done. The EKG took about two minutes and it was over. Now that is my kind of test!
Once the EKG was done, the nurse in the holding area came to put in my IV. Yeah right. She first tries my right arm, and sees that is where the techs yesterday had my IV and also ripped my skin off with the tape they had used to hold the IV in place. So she graciously decides to move to my left arm instead. She inserts the needle, starts fishing around for the vein and no luck. So, now she moves to my left hand, seeing as how the vampires (the people my mother and I lovingly refer to who always come to get your blood for tests, etc.) got a vein in my right hand. So my nurse has me hang my hand down, and she again sticks the needle in and starts fishing around. After a few minutes, she says she is going to stop and clean up and leave it to the nurses in the surgical waiting room put it in. I think that is fine, not realizing that the reason she is doing that is she completly blew my vein and I was thus bleeding all over the floor of my hospital room. What a lovely way to start the day!
Sunday, June 29, 2008
Tuesday, June 24, 2008
Tests and Appointments
During my Monday meeting with Dr. Mikkelson, I was set up to have a gammet of tests run. It was also determined that I would need to have a port put in because ever since I had mono in the fifth grade, I've had shit for veins. Evidently, they are very small and very close to the surface. Lucky me. I guess it is just another reason that a person needs to drink 8 glasses of water a day! I never do, and that probably has something to do with my toothpick veins.
Anywho, my first test was scheduled for Wednesday morning. My husband had to work so I was with my parents most of the day. I was lucky enough to wake up with a horrendous headache (which I had been getting for a couple weeks leading up to this, making us think that the tumor maybe spread to my brain) that morning and was super tired as my first appointment was at 6:30 a.m. I seriously wonder if they think a test will be easier earlier in the morning because they are hoping the patient will just fall asleep. No such luck.
The first appointment I had was a Breast MRI. I honestly think that this test was invented by the Taliban. Only they could be so cruel as to devise a test like this. I have added a picture of what a breast MRI consists of. Although the picture doesn't look to bad, it was absolutely horrible. You first have to have an IV put in so they can inject you with some dye during the test. Then you have to lay on your stomach on an incline with your boobs literally hanging through this metal contraption. The tech then gets to push, pull and bounce your breast into the exact position needed. Once you are lying on the incline with a super cold metal bar hitting you right in the rib that is underneath your breasts, you are told to pick a direction you want your head to lay, put your arms above your head and not to move. They then had the gall to put me into a tube no bigger than a tube of toothpaste for 45 minutes!! Seriously, can't they come up with some other way to get these results??? That was the worst test I have ever gone through in my entire life. I would have rather had both breasts removed at that point and have them do an autopsy on them.
Once I was able to come out of the tube, I raised myself up and said to the technician, "God that test sucked." She then told me that if only I had smaller boobs the test wouldn't have lasted nearly as long. Gee, thanks.
Once that test was done, the tech told me that I was going directly to my next test, so she would just keep the IV in. Again, gee thanks. My next test was the one we were all nervous about. This test was a CAT/PET scan. It would tell us if my cancer had spread anywhere else in my body. Now the best part about this test, is that they put you in a dark room for about 30 minutes while the nuclear medicine they pump you full of takes effect. Can you say nap time? Once your 30 minutes is up, you go into the testing room, lay on a slap that takes you through a big circle and that is it. I would have 5,000 more of those tests if I didn't think the nuclear medicine would kill me!
Finally, the last appointment of the day was with my new Oncologist. Morgan left work to go to this appointment with me as well as my parents. I showed up, and got put into a room with my family while the doctor's nurse Kandace asked a bunch of questions. Kandace is absolutely fantastic. She is young and you can just tell she likes to have a good time. She is definitely a source of sunshine in that place that makes you feel completely at home and welcome.
After meeting with her and talking about my Oncologist's tendency to mumble (my mom and he get along very well) Dr. Domke came in. He talked to us a bit telling us all of the facts that we needed to know. You can tell he is a very smart man as far as knowing exactly what he is talking about, but Kandace is definitely the personality. Dr. Domke then took me to another room where he evaluated my breast and based on some blood results he got bad, he said that I am estrogen positive with a big thumbs up. Unfortunately, I have absolutely NO CLUE what that means, but I'm guessing the thumbs up was a good indication as to it being positive!
Anywho, my first test was scheduled for Wednesday morning. My husband had to work so I was with my parents most of the day. I was lucky enough to wake up with a horrendous headache (which I had been getting for a couple weeks leading up to this, making us think that the tumor maybe spread to my brain) that morning and was super tired as my first appointment was at 6:30 a.m. I seriously wonder if they think a test will be easier earlier in the morning because they are hoping the patient will just fall asleep. No such luck.
The first appointment I had was a Breast MRI. I honestly think that this test was invented by the Taliban. Only they could be so cruel as to devise a test like this. I have added a picture of what a breast MRI consists of. Although the picture doesn't look to bad, it was absolutely horrible. You first have to have an IV put in so they can inject you with some dye during the test. Then you have to lay on your stomach on an incline with your boobs literally hanging through this metal contraption. The tech then gets to push, pull and bounce your breast into the exact position needed. Once you are lying on the incline with a super cold metal bar hitting you right in the rib that is underneath your breasts, you are told to pick a direction you want your head to lay, put your arms above your head and not to move. They then had the gall to put me into a tube no bigger than a tube of toothpaste for 45 minutes!! Seriously, can't they come up with some other way to get these results??? That was the worst test I have ever gone through in my entire life. I would have rather had both breasts removed at that point and have them do an autopsy on them.
Once I was able to come out of the tube, I raised myself up and said to the technician, "God that test sucked." She then told me that if only I had smaller boobs the test wouldn't have lasted nearly as long. Gee, thanks.
Once that test was done, the tech told me that I was going directly to my next test, so she would just keep the IV in. Again, gee thanks. My next test was the one we were all nervous about. This test was a CAT/PET scan. It would tell us if my cancer had spread anywhere else in my body. Now the best part about this test, is that they put you in a dark room for about 30 minutes while the nuclear medicine they pump you full of takes effect. Can you say nap time? Once your 30 minutes is up, you go into the testing room, lay on a slap that takes you through a big circle and that is it. I would have 5,000 more of those tests if I didn't think the nuclear medicine would kill me!
Finally, the last appointment of the day was with my new Oncologist. Morgan left work to go to this appointment with me as well as my parents. I showed up, and got put into a room with my family while the doctor's nurse Kandace asked a bunch of questions. Kandace is absolutely fantastic. She is young and you can just tell she likes to have a good time. She is definitely a source of sunshine in that place that makes you feel completely at home and welcome.
After meeting with her and talking about my Oncologist's tendency to mumble (my mom and he get along very well) Dr. Domke came in. He talked to us a bit telling us all of the facts that we needed to know. You can tell he is a very smart man as far as knowing exactly what he is talking about, but Kandace is definitely the personality. Dr. Domke then took me to another room where he evaluated my breast and based on some blood results he got bad, he said that I am estrogen positive with a big thumbs up. Unfortunately, I have absolutely NO CLUE what that means, but I'm guessing the thumbs up was a good indication as to it being positive!
Meeting with Dr. Mikkelson
Bright and early on Monday morning, my mom, dad, husband and I filed through the door of the Breast Care Center at St. Luke's Hospital. We were ushered into the library by Cathy (Dr. Mikkelson's Nurse Practitioner) who is absolutely amazing. As we pile around a small round table, Cathy takes up her post next to my mom while slyly moving the tissues from me to her. She said later that she figured my mom would need them more.
My doctor came in and explained what Inflammatory Breast Cancer is. She said that there would need to be tests run to see if it had spread anywhere, but that we are still going to beat this. She goes through the possible schedule of treatment being 4 rounds of chemo, mastectomy, 4 more rounds of chemo, radiation and then five years of being on hormone treatment. At this point, my mom is obviously crying as is my husband. My dad kept a pretty stoic face thank goodness, because if he starts, I'll never stop. I even tried to lighten the mood by referencing the fact that I have always wanted to lose weight and have smaller boobs, just didn't think this would be the way I would go about getting to those goals. Dr. Mikkelson and my mom both gave me a look saying that there were easier ways to go about it, but it definitely lightened the mood.
I guess my thing is that no matter how much I cry, or upset or pissed off I am, nothing is going to make this go away except the treatment. The only thing I can do is look at it like anything else that I have to do. Like my husband says, our motto is "One Day at a Time - Balls to the Wall". Not too catchy, but it works.
My doctor came in and explained what Inflammatory Breast Cancer is. She said that there would need to be tests run to see if it had spread anywhere, but that we are still going to beat this. She goes through the possible schedule of treatment being 4 rounds of chemo, mastectomy, 4 more rounds of chemo, radiation and then five years of being on hormone treatment. At this point, my mom is obviously crying as is my husband. My dad kept a pretty stoic face thank goodness, because if he starts, I'll never stop. I even tried to lighten the mood by referencing the fact that I have always wanted to lose weight and have smaller boobs, just didn't think this would be the way I would go about getting to those goals. Dr. Mikkelson and my mom both gave me a look saying that there were easier ways to go about it, but it definitely lightened the mood.
I guess my thing is that no matter how much I cry, or upset or pissed off I am, nothing is going to make this go away except the treatment. The only thing I can do is look at it like anything else that I have to do. Like my husband says, our motto is "One Day at a Time - Balls to the Wall". Not too catchy, but it works.
Wednesday, June 18, 2008
Diagnosis - June 7, 2008
Okay, so this was supposed to be a good day. Morgan and I had bought a new bed frame and night stand for our bedroom back in April and it was finally getting delivered today. Morgan was just getting ready to leave for work when the men from Value City showed up with our bed and night stand. It looks awesome and feels even better to lay in. I was so excited to go to sleep that night in our new bed!! Later on in the morning I did some small chores and talked to my mom a couple times. Then at 10:35 a.m. I got a call from my surgeon. The thought of "Oh crap this can't be good if a doctor is calling me at home on a Saturday morning" was the first thing that went through my head. Then she said something I will never forget, "Angie, the pathology reports just came back and it was what we feared, you have the Inflammatory Breast Cancer."
How is someone supposed to deal with a call like that, especially someone sitting on her couch by herself at home? Morgan had left for work about an hour before. The doctor went on to describe what would happen and that she wanted to see me on Monday to go over what the plan of action is. The best thing she said is to me is "We ARE going to beat this."
After I hung up the phone the only thing I could do was cry. Was I going to be one of the statistics of women my age that was going to die from breast cancer at 28?!?! How could this be happening to me?? Why was this happening to me??? Out of all the women in the world, I drew the short straw evidently.
I picked up the phone and I don't care who you are, if you have a good relationship with your parents, even if you are married to the best man in the world, the first person you want to call with news like this is your mom. So that is what I did. She picked up the phone and I told her that I had just heard from the doctor with the results of the pathology done on my samples. "Mom, I have breast cancer," was all I could get out before the tears came. I don't know if my mom started crying right away or if it was just me, but I don't remember much of the conversation after that other than her saying her and my dad were coming up to Wisconsin as soon as he got off work and my mom would stay with me all week because of the tests I was going to be having - my dad would have to go home to work two days and then he was taking the rest of the week off to be up here as well.
I then had the second hardest call to make, I had to call my husband. As I was getting ready to call him, he called me. He said I just felt like I should call you to see how you are doing. That's when I delivered the news to him. By this point I'm all cried out, and he has decided that he thinks he should come home right away. I told him that that wasn't necessary because I was going to be fine. I would just see him in 5 hours when he got off work. 30 minutes goes by and here he is walking through the door crying. At that point I decalared a No Cry Zone! I told him and my mom that crying wasn't going to help anything. Me getting pissed, upset, depressed or crying was just going to take the energy I needed to fight this disease. And when the time came (and I know it will) when I need to crash a little, I need to know that someone is going to be there and be strong for me, instead of me being strong for everyone else. He agreed and after an hour or so, he stopped crying as much.
About four hours later, my parents arrived and I informed my mom of the No Cry Zone so anytime she wanted to cry she needed to leave the room I was in because if my mom and I see eachother crying you better go buy some Kleenex, because we don't stop for a while. She cried a little as did Morgan and then we talked about the plan for Monday with my doctor's appointment being at 9:00 a.m. I think it was hard on my dad because we are so close and he had to leave on Sunday so he couldn't be at the doctor's appointment with me. That night, my parents stayed in my apartment, and the bed I was so looking forward to sleeping in...became their bed for the night. Grrr. My bed consisted of being the couch - which I normally get awesome sleep on, just not that night. Morgan was going to sleep on the futon in the back bedroom, but he refused to leave me and instead slept on the floor next to the couch. I even had to get up in the middle of the night to go to the restroom and as I was coming out, he woke up and was standing up to make sure nothing was wrong with me.
I do have to say that I don't know how people go through this without a family like mine. They are there every step of the way and more supportive than I could ever ask them to be. If there is one blessing to come out of this, I would say that it has brought me closer to my mom, and my husband. God's plan is a goofy one!
How is someone supposed to deal with a call like that, especially someone sitting on her couch by herself at home? Morgan had left for work about an hour before. The doctor went on to describe what would happen and that she wanted to see me on Monday to go over what the plan of action is. The best thing she said is to me is "We ARE going to beat this."
After I hung up the phone the only thing I could do was cry. Was I going to be one of the statistics of women my age that was going to die from breast cancer at 28?!?! How could this be happening to me?? Why was this happening to me??? Out of all the women in the world, I drew the short straw evidently.
I picked up the phone and I don't care who you are, if you have a good relationship with your parents, even if you are married to the best man in the world, the first person you want to call with news like this is your mom. So that is what I did. She picked up the phone and I told her that I had just heard from the doctor with the results of the pathology done on my samples. "Mom, I have breast cancer," was all I could get out before the tears came. I don't know if my mom started crying right away or if it was just me, but I don't remember much of the conversation after that other than her saying her and my dad were coming up to Wisconsin as soon as he got off work and my mom would stay with me all week because of the tests I was going to be having - my dad would have to go home to work two days and then he was taking the rest of the week off to be up here as well.
I then had the second hardest call to make, I had to call my husband. As I was getting ready to call him, he called me. He said I just felt like I should call you to see how you are doing. That's when I delivered the news to him. By this point I'm all cried out, and he has decided that he thinks he should come home right away. I told him that that wasn't necessary because I was going to be fine. I would just see him in 5 hours when he got off work. 30 minutes goes by and here he is walking through the door crying. At that point I decalared a No Cry Zone! I told him and my mom that crying wasn't going to help anything. Me getting pissed, upset, depressed or crying was just going to take the energy I needed to fight this disease. And when the time came (and I know it will) when I need to crash a little, I need to know that someone is going to be there and be strong for me, instead of me being strong for everyone else. He agreed and after an hour or so, he stopped crying as much.
About four hours later, my parents arrived and I informed my mom of the No Cry Zone so anytime she wanted to cry she needed to leave the room I was in because if my mom and I see eachother crying you better go buy some Kleenex, because we don't stop for a while. She cried a little as did Morgan and then we talked about the plan for Monday with my doctor's appointment being at 9:00 a.m. I think it was hard on my dad because we are so close and he had to leave on Sunday so he couldn't be at the doctor's appointment with me. That night, my parents stayed in my apartment, and the bed I was so looking forward to sleeping in...became their bed for the night. Grrr. My bed consisted of being the couch - which I normally get awesome sleep on, just not that night. Morgan was going to sleep on the futon in the back bedroom, but he refused to leave me and instead slept on the floor next to the couch. I even had to get up in the middle of the night to go to the restroom and as I was coming out, he woke up and was standing up to make sure nothing was wrong with me.
I do have to say that I don't know how people go through this without a family like mine. They are there every step of the way and more supportive than I could ever ask them to be. If there is one blessing to come out of this, I would say that it has brought me closer to my mom, and my husband. God's plan is a goofy one!
Monday, June 16, 2008
Biopsy & Tests
When Dr. Mikkelson called me and told me to come in, her secretary said that I had a bad infection so she wanted to see me right away. I called my husband and we went to the doctor right away. On our way there, all we did was laugh and smile since the secretary said it was an infection. That was the best news we had had in a month!
Once at the doctor, that joy quickly turned to aprehension because Dr. Mikkelson confirmed that my symptoms were too similar to IBC to be ignored. She scheduled an emergency Mamogram as well as biopsy to be done that afternoon. I went down for the Mamogram and HOLY HELL did that hurt! The nurse actually asked me if I had implants, come on, seriously?? I just laughed at her.
I watched as she continued to take the pictures and saw that as she photographed my left breast, there was a large lump that almost looked like two. The first lump had the circumfrence of a quarter and the other was the size of the top half of my finger. It was looking more and more like this wasn't an infection.
So back up to the doctor's office for the biopsy. Again, HOLY HELL did that hurt! The needle was no lie about the length of my forearm! Thank God for the numbing agent otherwise, I might have run out of the doctor's office!! The biopsy took about 30 minutes until she got a sample of my skin as well as two core samples to send off to pathology. Once she got the bleeding stopped and got me stitched up, I was free to go home. She said that if the results came in sooner rather than later, I could hear from her on Saturday otherwise, expect to hear from her on Monday.
Once at the doctor, that joy quickly turned to aprehension because Dr. Mikkelson confirmed that my symptoms were too similar to IBC to be ignored. She scheduled an emergency Mamogram as well as biopsy to be done that afternoon. I went down for the Mamogram and HOLY HELL did that hurt! The nurse actually asked me if I had implants, come on, seriously?? I just laughed at her.
I watched as she continued to take the pictures and saw that as she photographed my left breast, there was a large lump that almost looked like two. The first lump had the circumfrence of a quarter and the other was the size of the top half of my finger. It was looking more and more like this wasn't an infection.
So back up to the doctor's office for the biopsy. Again, HOLY HELL did that hurt! The needle was no lie about the length of my forearm! Thank God for the numbing agent otherwise, I might have run out of the doctor's office!! The biopsy took about 30 minutes until she got a sample of my skin as well as two core samples to send off to pathology. Once she got the bleeding stopped and got me stitched up, I was free to go home. She said that if the results came in sooner rather than later, I could hear from her on Saturday otherwise, expect to hear from her on Monday.
Wednesday, June 11, 2008
Introduction
Where to begin. This is the first time I have done something like this. I wish I wasn't doing it now, but this seems the best way to communicate with everyone. My name is Angie and I am a 28 year old married woman from Milwaukee. I have been pretty healthy my entire life. That all changed on June 7, 2008 when I got a call from my doctor that some tests she had run came back as being positive for something called Inflammatory Breast Cancer, the rarest form of breast cancer there is. Only 1% of women diagnosed with breast cancer are diagnosed with IBC.
This all began about nine months ago while I was studying for my LSAT. For those of you who don't know the LSAT is a test that is needed for anyone to apply to law school. My plan was to take the LSAT, go to school and become a lawyer, have children and live happily ever after. Never in my dream did I foresee myself walking down that road with breast cancer. In September of 2007 as I was studying for my test, I remembered getting a sharp stabbing pain in my left breast. I figured it was just the stress of the test and ignored it. A couple of months later, while doing a self exam, I found a lump. I am a very large chested woman, so thinking that it was just fatty tissue, I did nothing about the lump. Recently, my breast became more swollen and about three weeks ago, it became very red and hot to the touch. Heeding my friends and parents advice, I made an appointment with a doctor at my family practice office. My normal doctor was unavailable as she works only three days a week, so I was forced to see another doctor. That doctor, ordered and ultrasound and put me on some antibiotics, because someone as young as me was too young to have breast cancer. A couple days later, I had the ultrasound - but nothing was found. The radiologist came in to the room and said that he thought I had a really bad infection because again, I was too young to have breast cancer. The next day, I went back to my doctor because of some headaches I was having, this time my mother came in from out of town to go with me. She forced the doctor to send me to a surgeon for a second opinion on my lump. In doing research on IBC, I found that my symptoms and the symptoms of IBC were extremely similar - so obviously we didn't want to wait around for two weeks to test the antibiotics he wanted to try. So we got a referral for a surgeon and when my mother asked the doctor if she was a specialist in breast issues, he said "well she is a woman, and she is a surgeon". Like that means anything at all??? Luckily, the doctor he sent me to see was to busy so her partner called me the next day and got me in to see her a week earlier than my scheduled appointment.
This all began about nine months ago while I was studying for my LSAT. For those of you who don't know the LSAT is a test that is needed for anyone to apply to law school. My plan was to take the LSAT, go to school and become a lawyer, have children and live happily ever after. Never in my dream did I foresee myself walking down that road with breast cancer. In September of 2007 as I was studying for my test, I remembered getting a sharp stabbing pain in my left breast. I figured it was just the stress of the test and ignored it. A couple of months later, while doing a self exam, I found a lump. I am a very large chested woman, so thinking that it was just fatty tissue, I did nothing about the lump. Recently, my breast became more swollen and about three weeks ago, it became very red and hot to the touch. Heeding my friends and parents advice, I made an appointment with a doctor at my family practice office. My normal doctor was unavailable as she works only three days a week, so I was forced to see another doctor. That doctor, ordered and ultrasound and put me on some antibiotics, because someone as young as me was too young to have breast cancer. A couple days later, I had the ultrasound - but nothing was found. The radiologist came in to the room and said that he thought I had a really bad infection because again, I was too young to have breast cancer. The next day, I went back to my doctor because of some headaches I was having, this time my mother came in from out of town to go with me. She forced the doctor to send me to a surgeon for a second opinion on my lump. In doing research on IBC, I found that my symptoms and the symptoms of IBC were extremely similar - so obviously we didn't want to wait around for two weeks to test the antibiotics he wanted to try. So we got a referral for a surgeon and when my mother asked the doctor if she was a specialist in breast issues, he said "well she is a woman, and she is a surgeon". Like that means anything at all??? Luckily, the doctor he sent me to see was to busy so her partner called me the next day and got me in to see her a week earlier than my scheduled appointment.
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