Dr. Cuevas

Just thought I would let you all know I got a new Oncologist! Dr. Domke is the leading Hematologist in the state and has decided to dedicate his practice to that endeavour. Wheaton Franciscan has since closed the cancer care clinic at St. Joe' Hospital and has transferred Dr. Francis Cuevas out to the Reiman Center which is where Dr. Domke was based. The best part about it is the fact that Dr. Cuevas will be at the Reiman Center the entire week so I will no longer have to go to the hospital two days a week for treatment!!! WOO HOO!! I have also met Dr. Cuevas briefly and he seems great! He is a really nice guy who one of his specialities is breast cancer so I feel great going to him now! I have added his picture off to the side so you can see what he looks like.

Hospital Stays

Hello everyone! Sorry I haven't blogged in a while, but for those of you who know what have been going on can understand why. I'll go into that on the next blog. After the first and second round of chemo I had the normal side effects of the mouth sores, digestive issues and fevers. After the third and fourth rounds those side effects got to the point where I needed to be hospitalized.

I went to St. Francis Hospital for both stays, and unfortunately the first one wasn't very good. The first time I was hospitalized I went to the St. Francis Hospital in Franklin which just opened. Unfortunately they didn't have inpatient care at that point so I was transferred to the normal St. Francis Hospital and put on the cancer floor. The nursing care I initially received was HORRIBLE. I had a nurse who had been working there for four months! She had never drawn blood before and had me sitting in the room for 4 hours without even being hooked up to an IV!! I also asked for a pain pill at 8am when I arrived and didn't get it until 3pm! The only reason I got it is because my friend called the nursing supervisor to complain. Thank you Lisa! I was released from the hospital a couple days later and sent home. The doctor said that he should knock my chemo down by 25% but because I am 28 (seems to be working more against me than form me) he was going to give me the full amount of chemo and that I would probably be in the hospital again.

The second stay, was again at St. Francis. I was at my pre-op appointment with Dr. Mikkelson and looked so horrible that they decided either they were admitting me or Dr. Domke was going to admit me to St. Francis. I went through the ER at St. Francis and I wanted to scream! The ER doctor ordered a rectal temperature that made me scream bloody murder due to some of the side effects that I still had. So after Morgan took a half hour to get me to stop crying they put me in a negative pressure room because my white blood cells and red blood cells were so low. Once the results from all my tests came back it was determined by the ER doc and the hospitalist that I would go into ICU because my heart rate was over 130, by blood pressure would go from 99 over something, to 134 over something, back down to 88 over something. Plus my white blood cells and red blood cells were so low. Once I got to ICU, I couldn't love St. Francis more! The nurses there were outstanding! My only problem was that the doctor hadn't ordered any pain medicine for my throat which was one of the main reasons I had gone to the hospital in the first place. I was so frustrated with my situation that I finally hit rock bottom. I got back into bed and started crying and telling Morgan that I couldn't handle it anymore. I was done with treatment, that no matter what I did I felt worse and worse, that nothing was making me feel better. I couldn't do it. Morgan sat over me holding my head and rubbing my head for over a half hour. By the time I was done crying, the nurse had gotten an order for pain medicine which put me to sleep finally.

Once I got the pain meds, and I was in ICU for a couple days I got my second blood transfusion. Those freak me out pretty bad. I figure that my odds are pretty crazy to get IBC at my age that my odds of getting some disease from a transfusion are pretty good. Luckily, I haven't gotten anything from the two transfusions. I was also then moved to the heart floor where my friend Lisa was working. It was fun with her up there because she would come and hang out in my room with me. That had to be the most fun I had while in the hospital ever! Thanks Lisa! I was finally released from the hospital on September 1st. I still haven't gotten my appetite completely back, but hopefully that will come in time.

Tired

For those of you who have been following my blogging, sorry, I've been a little busy :) Over the past month, I've gone through two more rounds of chemo. That's right boys and girls, that means I only have one more round until surgery time!! WOO HOO! Then I have about a month and a half off of chemo while I recover from my surgery. Thank heaven for small favors right!

So, where did I leave off. After the first round of chemo, the side effects that can come, did. I got the mouth sores (which I guess I'm even more prone too because I got them even before I got sick), I got the indegestion and what we will call "stomach issues". My "stomach issues" have changed through the different rounds of chemo, but I'm just hoping they don't get worse. I haven't gotten sick as in throw-upy sick (is that a word??), but I have gotten nauseous a couple times here and there. Thank goodness for anti-nauseau meds!

The worst thing about the side effects of the chemo is the complete and total lack of energy! For those of you who have had a really good massage, you know how your body just feels completely weak afterwords? Or for those of you who just get so tired that your arms or some other part of your body feels like it weighs 900 lbs and doesn't want to move? That is how I feel ALL THE TIME. Gets pretty old! I was seriously lying on the couch the other night and woke up from a nap around 8pm. It honestly took me an hour to get off of the couch, go to the fridge to get some applesauce since I hadn't eaten since 3:30 that afternoon, and go back to the couch and finally eat the applesauce. I mean come on! I ended up sending a text message to my husband telling him that I seriously thought he might find my dying carcas on the couch because I couldn't move! Then when he finally got home, he put me to bed, but my stomach wasn't liking the idea of going to sleep. So I got back up, took some meds and grabbed a piece of bread to eat and layed my head on Morgan's stomach. It took me almost 30 minutes to eat the bread because although my head is saying eat, my body is say F**k you, that takes to much energy! First you want me to bring the food to your lips, then you want me to open your mouth, then you want to chew and swallow??? Who do you think you are??

Round 1 of Chemo

Going into all of this I really didn't know what to expect. I figured that my doctor's and nurses knew what was going to happen, but even though I knew that, I was still pretty unsure.

I arrived at Dr. Domke's office on Monday morning to get "hooked up" to my pump. The pump consists of a small machine that is hooked up to an IV bag filled with chemotherapy. The pumps purpose is to continuously give me chemotherapy over the entire chemo week. One of my dual pumps is accessed by a needle with something that looks like a butterfly on the end of it. The needle is connected to a long tube that goes under my clothes and the tube goes into what looks like a large fanny pack that has a long strap on it that I can carry. When connected, I have to carry the pump everywhere. And I do mean EVERYWHERE! Have to go to the bathroom? Here I go with the pump! Shower, yeah right - can't get the pump wet, so it's sponge bath time! Sleeping? Try doing it with something that sounds like it is taking your picture every couple minutes! Things get pretty interesting!

Anywho, I got connected to the pump with no problem and left the doctor's office. The next day, I had to go to the hospital location because my Oncologist splits his time between the hospital and his own personal office. So I went to the hospital on Tuesday and had to get the extra chemotherapy. On this day, they accessed my other port with another butterfly needle thingy with another tube connected to it. Through that tube, they hooked me up to an IV and gave me anti-nauseau medicine. They also have to give me these shots to be sure that my lines are clean and to prevent any blood clots. Man do those shots taste nasty!! From what I gather, not everyone can taste the medicine when it is injected. Another way that I am just lucky I guess! When you get the shot it actually tastes like you are chewing on plastic wrap that is trying to dissolve in your mouth. Pretty gross.

The medicine I get on Tuesday, Wednesday and Thursday consist of the anti-nauseau medicine, and then two syringes full of this "red stuff". One of the nurses at the hospital called in the Ruby Sisters, which I thought was cute too. Not really sure what each of my chemo meds is supposed to do or what the difference between the two is, I just provide the vein for the meds to go into. Have the syringes have been emptied into my system, I then get hooked up to a bag that is dripped into the IV that contains more chemotherapy.

Each of these sessions take between 2 and 3 hours. After I'm done I am usually feeling pretty good, but within a couple of hours, I am dead tired. 3pm seems to be nap time during chemo week. On Friday, I had to go back to the hospital to get a Neulasta shot. This shot gets put into my arm and is supposed to increase the production of white blood cells in my system. I need the blood cells so I don't get a infection, etc. but the chemo doesn't know the difference between good cells and bad and tends to kill them off.

Stay tuned for the week after chemo!

Purpose of the Port

As you can see in the pictures I've added, the port looks like a dual drum that the nurses at the oncology clinic can access for my chemo. Dr. Mikkelson made an incision right under my clavicle and made a pocket in the skin. She placed the dual port in the pocket and then had to make another incision that went deeper under the tissue to find a vein. She then threaded the cord that is attached to the port, through my vein so that the chemotherapy can go directly into my blood stream. This is also how I will have any blood drawn over the next couple of months of treatment.

I absolutely love the port. Although it looks pretty nasty, it saves my arms from getting poked and proded all the time. The best thing about it, is that it comes with a numbing cream that I can put on an hour before I get stuck, so I don't feel a thing. Ah, the marvels of modern science!

Surgery

So the nurse decided that she would let the pre-surgical nurses put my IV in. Obviously, after what she had just done, that was a good idea. Around 12:00 my transport came and after saying goodbye to my parents I was wheeled into the pre-op room. As I was waiting in the room I couldn't help but think, "Wow, didn't think I would be here this soon." For those of you who didn't know, at the beginning of May I had knee surgery to remove a torn meniscus. Sitting in the pre-op room again, was a little annoying, but I knew it was just the beginning.

The nurse came over and after a couple minutes, was able to get my IV started. HALELUEAH! A couple minutes later, my sleepy doctor came in to tell me what to expect, and the entire time I was thinking, "yeah, yeah, yeah, already heard this last month." When I told him I understood, he walked away and asked the nurses at the nursing station if they had any new magazines. That made me feel REEEALLLYYY GOOD!

A couple minutes later, Dr. Mikkelson came in to just go over the surgery. She said it wouldn't take too long, so we were going to get started. I got wheeled in, and moved on to the cold operating table and the last thing I remeber is asking the sleepy doctor if he found a new magazine. His answer thankfully...."No."

Now get this, I don't care what the doctor says or who they say it to, but I WOKE UP DURING SURGERY! I opened my eyes and saw the table over my head with the blue curtain. Seriously, maybe he was reading a magazine!!!

Next thing I know, I'm being woken up after the surgery is done in the operating room. They move me over to another table and tell me that they are going to sit me up and that I'm going to need to take a deep breath so they can get an X-ray to make sure the surgeon didn't knick my lung when putting the port in. Do you know how hard it is to take a deep breath. All I could do was cough. Not only did I just have a tube down my throat, but I just woke up out of a deep sleep. Who do you think I am??

Anywho, the Dr. got the X-ray and everything looked great. I got wheeled back to my room and no sooner did they put me in the room, than a tornado warning went into effect and I had to get wheeled back OUT of my room into the hallway with all of the other patients. That is where my parents found me. Boy was that fun! Stupid weather!

Pre-Surgery Tests

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!

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!

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.

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!

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.

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.