3/10/13

Post Chemo Day 17
My face is slowly getting better. I just look like I have a pink scar all over my face. I seen the oncologist Thursday and he swears that the Taxotere caused the reaction. He took me off of the Taxotere and Perjeta and is giving me two week off to let my face heal. He switched in a new med called Abraxane. Bad thing is I have to start going weekly. Hopefully the side effects are minimal.

I went down to Ulta's for a makeup lesson. The ladies were amazing. They spent an hour and a half with me and showed me how to cover up my psoriasis. I spent way more money than I should have, but hey- look at those results!

3/4/13

Post Chemo Day 11
I thought maybe my face would be getting better but it's still just getting worse. I just don't even know what the hell to do anymore. It is the worse pain ever. My face aches 24/7, I can barely sleep and must take a Vicodin every 4 hours or I cannot even function. I can't even form my mouth enough to swallow my own saliva-  my face is that swollen. It's almost like I had my wisdom teeth pulled out but even my chin hurts. I have like this thick scab over my chin into my jaw and I can't move my face around. It's so sensitive that everything hurts it. Looking at my face makes me sick to my stomach I look so damn ugly. So many people want to visit but I don't want anyone here while I look like this. I am absolutely hideous. Thank goodness I got my medicine today- woot woot! I pray it works within 3 days but I have a feeling my face has a whole lot more healing to do than three days. My oncology appointment in on Thursday so I am hoping I can get off of the drug causing it because I cannot deal with this much longer. Every day I wake up hoping it looks a teeny better and try to be in a good mood but it fades through the day. I have been falling asleep in the afternoon but the kids make that a wee bit impossible. They just don't get it. They throw fits and whine and cry, I get so mad at them. I hate being in this much pain all the time. Aughhhhh.

3/1/13

Post Chemo Day 9
Days 3-5 post chemo were the worst pain imaginable, worse than- gasp- yes- childbirth. But it only got worse when on Post Day 5 my face decided to erupt in a hideous rash. The rash so severe that my face ached in pain. I was unable to eat or sleep. I broke down and called my nurse who sent me to the ER on Monday. They gave me an antibiotic but it just kept getting worse and by post chemo day 8 I was back at the ER again. They scheduled me to see a Dermatologist this time the following morning. So I drove downtown to somewhere I wasn't familiar with by myself, without any pain meds, looking like an alien. They said they see it a lot with cancer patients. Pustlar Psoriasis. Greeeeaaaattttt. So not only do I feel like shit, I look like it to. Don't believe, have a gander at the progression of "The Rash" . . .

I could start to feel my hair thinning out so I had a "Shave Party" on Saturday with everyone who has been really helping me with things- Mom, Sarah, Tamie, Megan, Courtney and Danielle. We picked up pizza on the way to Moms and ate and chatted. Then Steve started and everyone else took turns and Tamie finished up. Even the girls had a go at it. I cried a little bit. It's an emotional experience. I don't really care that my hair was gone, but I really cared why it was happening. 

2/23/13

Post Chemo Day 3

The side effects started last night. I felt so achy and was in so much pain. Little did I know how bad it would get. I slept pretty good through most of the night until about 3 am when Stephen woke up screaming. Steve had to get up with him because I physically could not get out of bed. He cried for me, poor buggar. Within a half a hour he was back up again, but this time, I let him come in the room and get a 15 minuet cuddle and I staggered with him back to his room. The girls were up bright and early and I turned on the TV in my room. Every time they moved the bed, I cringed. It hurt so bad and felt like an eternity before Sarah finally showed up. I only managed an hour before I fell asleep on the couch. I slept most of the day and Sarah made me come and get some food. This pain is incredible. I feel like I was set out in the sun, with baby oil, crushed between two steel slabs and then given a mutated flu gene. Every place there is a hair on my body aches. My face feels like it is being stretched beyond the limits of the world. My neck and shoulders may just fall off from the pain. Nothing seems to help. I wasn't ready for this.

Stephen was out of control tonight. He screamed for what seemed to be the entire evening. Nothing soothed him. Lily joined his madness for a while but is easier to get over her issues. They just don't understand. I feel like a helpless mom and that is just about the worst feeling.

2/21/13

It's been 16 days since I jotted anything down. 16. What a number. Shannon was born on the 16th and she forever changed my life, and let me tell you, in these past 16 days my life changed in no way like it did when she was born. 16 days ago, I would fight this C and I knew I'd live. Today, I can't say the same. An incredible whirlwind of emotions has taken over my life.

15 days ago, I went for my Bone Scan and CT scan. I was feeling sick since the day before. I had a cough for a solid month and while all of the Project Sweet Peas Board of Directors were in to receive the $20,000 check from Chase; my back pain went through the roof because of my cough. It was unbearable. So after all of my scans that morning, Steve made me go to the ER. Apparently having C and having the issues I was having was not good. How did I know they would all be looped together in a matter of hours?

I was admitted, and in my room for only two hours when my Breast Surgeon came in. She told me that she had the results of my scans, and she wished she had better news. They found cancer in my liver, 2 spots on my spine, and in the other breast. I was fighting Stage IV breast cancer. I have been in this place before. I stopped listening, and broke down. I just remember looking at her sobbing and asked if I was going to die. Her response "We are going to try and not let that happen". Not a "Oh my Gosh, no hunny, what an over exaggeration, you will be just fine"; They would "try" to save my life. Thanks, I guess.

I haven't Steve cry like that for years. He sobbed as he made the phone calls and I laid there in a comatose state. I went back to the dark place, my eyes were swollen and hurt from crying, I couldn't sleep, it consumed my every thought. I am dying. I am going to die long before I should. Would I see my kids in 5 years? Chances are I would never see them have kids, and that broke my heart most of all. I would die before my husband, who I always assumed would die before me. Sarah stayed with me overnight because Steve didn't want me to be alone, and she and Danielle did a darn good job to keep me in better spirits.

I stayed in the hospital for a couple more days as they pumped me full of meds for my upset belly and tried to get my cough to go away. They think I may be starting in to asthma, hence my cough with breathing problems. My nurses were awesome, and made me laugh so hard. They will never have any idea of the impact they made on me those days. I had to turn my phone off because it was going crazy with supportive texts and calls, but I couldn't bring myself to talking to much of anyone, I still really can't.

I ended up cutting my hair once I was released because I knew I would be losing it soon anyway, but I wasn't ready for a complete shave yet. I hated it at first (sorry Sarah!!) but it was more because I knew why it was short. I didn't choose willfully to do this. Just like I didn't choose to have a hysterectomy, it was chose for me. And to live, yet again, I had to do more stuff I didn't want to have to do. Another part of my femininity was stripped away from me. I was slowly be torn away from my womanhood- and it would soon get worse.

Danielle came with Steve and me to the oncologist on the 14th and took notes. Thank goodness she did because I got lost in everything he had said. Basically, only 5% of metastatic breast cancer (cancer that spreads) is curable. So, chances are slim that any of this cancer will ever go away. The only hope is to stop it from growing and spreading. Surgery is not in my future. They will do a couple rounds of chemo and targeted drugs for my type of mets and then repeat scans and see where we are. That is it. All we can do is prolong my life as long as we can. I pray that I am that 5% of curable Stage IV mets cancer patients, but, let's face it, the odds have never been in my favor. I ain't no Katniss Everdeen.

The doc wanted me to start chemo ASAP. So I had my first round on Wednesday. I tried hard not to think about it, but it ate at me like nothing I have ever felt before. My first round meant that this was really happening. It was a reality that I had cancer and I was indeed dying. As soon as my nurse started hooking me up on my meds I lost it. I just couldn't stop crying. It was really happening. Really.

It wasn't terrible, I didn't have any bad reactions, but that's probably because God figured to at least give me a "freebie" with it. I am actually a little frightened that maybe it isn't working because it went so well. Yesterday I did good; no bad side effects. The steroid I am on for my bone mets cause servers insomnia, so I just don't get to sleep for a couple days while I do a round. I had some chills like I had the flu but it's just another day I am alive.

2/6/13

I saw the Breast Surgeon today. Doc found two types of BC, which is the type that is in my milk ducts and has not moved out (DCIS), and I also have the IDC (Invasive Ductal) which means it has moved out of the ducts in to the tissue. When you have BC, they check your hormone receptor status, which means they try to see if estrogen, progesterone or a protein called HER2neu is "feeding" your C. Each type of those is treated differently. I am negative for the E and P but am positive for the HER2. So this protein normally is fine, we all have it, but mine is rapidly reproducing and causing my cancer. It also makes my prognosis and chances for re-occurrence greater. Only 15% of BCs are HER2+. It has started to spread and was also positive for spreading through the lymph nodes. My stage is still 2, so I am right in the middle of "okay BC" and "oh shit BC". Good thing about being HER2+ is that there is a specific chemo that targets the protein, but the chemo rounds will be longer and I will need more of them than most.

I have an MRI today which is standard, but have been battling back pain since around the time I found the mass and go for a bone scan and a CT scan tomorrow. I also have to see a genetic counselor today, given my age and hormone status. This will tell me if the BC is genetic or not.

I go on Valentine's Day to see the oncologist and that is the appointment that we will have a solid plan that we'll start soon after. Doc today says that it is most likely given all my factors that I will start Chemo first to stop it from growing and reduce its size.

1/25/13

 
I forgot what it was like to have your eyes hurt so badly from crying that they burn. I forgot the feeling of them being so swollen and red until today.

I started to feel my stomach churn around 10am so I called to see if my labs came back. I got a call back from the nurse around 1130. I have joined the fight against cancer.

Invasive (I cringe at that word) Ductal Carcinoma. She wouldn't really give me a stage but guesses preliminary it was stage 2, grade 3, and spread in my lymph nodes.

I just cried, what else can ya do when do when someone tells you that you have a potentially fatal diagnosis? Your mind goes somewhere, to a dark place.

Telling the kids was hard, they just didn't understand. We told them during lunch that Mommy was very sick. And Lily asked if it was because of my boo-boo's (from the biopsy). I told them that Mommy was going to lose her hair and be bald like Daddy. They understood that a lot better, and just said "really, mom?" I think they will probably cry when they see my hair. Hair, to them, means you are a girl; so if I lose my hair, and they know I am a girl,what does that mean? My family took it well when I called, although, they have no choice. I think they were expecting this. It's always me that calls with bad news. Although, I am sure they broke down at some point.

It sucks learning this on Steve's birthday. Aughhhhh. What a horrible day.

I know I will beat this. I know I will, but, this fight is going to suck, and I wasn't really looking for this battle. I won't lie, I have asked "Why" a thousand times over. I don't want this fight; I don't want to be strong. I am so sick of it. Didn't I prove how strong I was when He took my daughter, or when I lost my second precious baby, or when the girls were in the NICU, or when He tried to kill Stephen and I, or when Stephen was in the hospital forever, or when I was told Stephen wasn't developing correctly and needed therapy 6 times a week plus braces? I have been strong. I don't want to be anymore! I am tired. I am so tired of what this life throws at me. Why can't things come easy for me like they do for other people who haven't endured a single thing in their life? What exactly is the purpose of this? I have done everything He wanted me to do. He took my 2 kids; I turned it around, created a beautiful organization, helped thousands upon thousands of families through that work, and then this. Maybe I am sick of helping families; maybe I don't want this lesson to help any more people. But He knows me too well, He knows it's not my nature. He knows I will turn this around and help more. I suppose even if I inspire one woman, it's what He wanted. But He doesn't understand, that burden, that duty, it's really not one I want.

After we put the kids to bed, I was hungry; Steve and I didn't eat well, so Steve said he would go to the store for me. I thought it was cute, it was like I was pregnant and craving something at the store and he was willing to go out in the snow to get it. I chuckled and said, "Oh you just need to get more chew, huh?" He looked at me and said, "I am quitting, I am not going to chew while you are fighting cancer . . ."
Wow, he said it. I started crying, he said it. The words came out. That hit me harder than a ton of bricks. I'm 28, and I have cancer. Holy shit.

1/22/13

Biopsy Day.

I go in, and feel like I am going to pee myself. I am by myself and trying to keep my mind occupied. When the nurse comes back to get me and takes me to the room is when the nerves hit. As soon as she tells me to lie down is when everything seemed very surreal. I am 28 and lying on a table to get a biopsy that can forever change my life, even kill me. I feel the tears starting and I just keep rubbing my toes together in my shoes to keep myself from just running out of there. I really didn't know what to expect. She explained everything to me, and then the doc came in and explained it all again. I prayed that maybe I made this all up. Maybe everything was in my head, maybe I didn't hear the doc right, and everything would just have disappeared. Well, that didn't happen, and everything was still there. The whole procedure was about an hour; he cut me in 3 places and then stuck the needle in. I hated it, it was uncomfortable, and hurt, but I had been through worse and just kept telling myself that. He took about 6 tissue samples from the breast and 2 from my lymph. They insert these super duper small ribbons in your breast for markers in case you need further tests; they know where the biopsy center is. I had to have a mammogram after to check the placement of the markers and the doc came in. He gave me his card and told me when I get my results to give him a call, or that if I had at questions until I get my results to give him a call and he would be, and I quote, "straightforward" with me. I wasn't going to let him get away with that comment and I said to him " what do you mean you will be straightforward with me?" and he went on to tell me that he just didn't know what we were looking at. He said he can normally tell when something is benign, but with me, he just couldn't tell.

I actually left there feeling better. It was liberating being able to see that I wasn't crazy and at everything was still where it was. It was good hearing the docs opinion about what he saw. It made me feel like I knew the answer to the results already.

1/21/13

It's the eve of my biopsy at 140am. Obviously, I can't sleep. I spent the night enjoying every little tiny detail of my life. I drug my feet leaving the kids at my Moms. I cried as I left for the first time ever. I didn't want to leave. What if that would be the last time I dropped them off at my Moms as a 'healthy' person? I took a long bath tonight and just laid there. I just lay in the tub and played music; like I used to when I was younger. I wanted to remember what it was like to just be in a tub, alone and at peace.

I have such an overwhelming feeling that I have cancer. It's incredible. I have never thought something was so wrong with me before. I have had this feeling that something would go wrong before . . . with her . . . And when I lost the other baby. I knew, from the bottom of my soul something was wrong with those pregnancies. I just knew.

I can't get out of bed, I can't function, I don't want to be around anyone but my Mom. I yell and scream, I fly off the handle. I don't want to respond to people, answer calls, or even see the computer. Being alone, it consumes my thoughts with things I need to treasure. I again, remember this. It's depression, it's anxiety. I felt it after she died.

Stephen, who still doesn't talk very well, says to me, "you are gonna be okay forever now Mommy". I sure hope so buddy, I sure hope.

1/18/13

Cancer watch day: what feels like a million.

I still strongly feel as if I do have Cancer. I just cannot imagine anything but. I really can't, and that scares me. Sometimes I think I am so over exaggerating this that it is just some mass and the lymph tumor will be gone. Yesterday I just kept having a thought of "how could you be so stupid as if to think you would have Cancer". Sometime it feels like I am making it all up and made up the symptoms and am just imagining this whole thing. I just think, you are not showing any other symptoms, you are fine. I think I am a horrible person for thinking I have Cancer when I really don't. Am I making this all up? If I am then why was the doctor so worried? Why would he be concerned over nothing??

1//11/13

I slept much better last night, even though I only slept about 4 hours. I am angry today and have been picking fights with anyone about anything. I have been yelling hard core at the kids today. I said a lot of things to Megan I should not have, but, I needed to. I needed the fight; I needed to think of something besides this.

I am depressed. I want to believe that I am just over exaggerating. I want to believe that I made some of this story up. I want to believe that I just want people to feel bad for me and am just saying things that are not true. Am I? Am I making this up? I don't think, but I am so messed up, that I don't know.
My mind is racing, it won't stop. It's all I think about. I wish I would have made the biopsy sooner. Maybe I should call and change the date. But I don't want to deal with it next week. I want to be in peace next week. As much peace as a mom celebrating the birth of a child that is dead can at least.
I can relate to Mommy more than I thought I ever could, she really does know what I am thinking.

I told the girls' pre-school teacher today, holy crap, she had me there for 40 minutes. If I wasn't worried, I wouldn't be making these arrangements. She was very, very helpful and offered to do so much, and that there are so many people who she knows would step up.

I also told my therapist today. She just cried. Because seriously, why would God do this to me of all people? Me, who has already been through hell and back? Augh......

1/10/13

I barely slept last night, my dreams were filled with things that may be. Most of the dreams I was alone and angry. I fought with people yet always by myself. I would wake up and think, "What if this is bad and I won't see my kids grow, what if they are raised without me?" I was crying myself back to sleep. I just cannot help but think the worst. All the arrows are pointing towards C. The estrogen, the tumor in the lymph node, the tumor in the breast- it all equals C. 

I woke up early and just laid in bed and thought. I remember when I was pregnant with Shannon; after we found out she was sick that I couldn't see her beyond her in my womb. I couldn't see a future that she was in. Sadly, I feel the same way about this. I don't know that I actually can see my future, I don't see me ever going to grow old with Steve, and frankly, I don't know if I ever did see that. I don't see the kids growing much farther beyond these young years. I don't see me going on our dream vacation to Hawaii. That scares me. If my intuition about the future was right once, will it be again- or am I crazy? I just don't know anymore. I don't know if I am crazy. I thought I was crazy for thinking that the mass was a clogged duct, and now, I feel crazy thinking it's something more again. Although, when I felt crazy the first time it turned out to be worse anyway. These next 2 weeks will drive me insane.

More and more signs make sense to me now, the pain in my upper side that I thought was just the bra, the tingling and numbness down my arm, the color changes in my breast, it all adds up. Maybe this is why I have not been able to shake this cough from last month? Maybe the white blood cells are trying so hard to fight the C that they are having trouble fighting off other infections?

I did awake with a new look on life. I am now so afraid of leaving the kids that I overdid everything today. I made marble colored pancakes, sausage and Steve was so sweet and made us eggs. I pretty much gave them whatever they wanted. I tried harder than normal to not discipline and yell at them.

I really just want to hide for the next 2 weeks. Unfortunately, I have so much to do that it just isn't possible. Again, surgery seems inevitable, benign or malignant; so there would be a lot in my life that would need prioritized and balanced. Survival is the only option.

1/9/2013

After Shaz was diagnosed in Aug with breast cancer, even though I am still young, I gave myself a breast exam. Since I gave birth to Stephen, I have not followed up with a regular OB. I have been followed by the Gynecological Oncology department, which has not given me a breast exam in the past 3 years. I guess I was preoccupied with recovering from that surgery.

The right side of my breast felt hard, and I could only describe it as a mass because it was quite large. It was not a lump, no marble like cyst; it was just a huge mass. I honestly thought it was a blocked milk gland from having Stephen. My milk never came in after I had him and I chalked it up to the traumatic birth.

Last month my breast started to get bigger, change colors and was starting to hurt so I made an appointment to see my ONGYN. When I went in, he would only describe the mass as a thickening of my tissue. I kept telling him I thought it was just a blocked gland but he insisted that I would have showed signs sooner and scheduled me for a on ultrasound on my breast. I had that done today.

The doctor started my exam and immediately started saying how abnormal the breast was. He mumbled the whole time saying things like. "Weird, isn't right, abnormal, not like the other breast'. He did the exam for about 3 minutes, looked at the nurse and said prep her for a mammogram. He told me that he did not like what he saw in the ultrasound and wanted to get a better look with a mammogram. I felt my eyes swell up with tears. I have never looked at this stupid ultrasound screen with good news. It's always been a frightening experience and this was the one chance it has to redeem itself, it disappoints me yet again.

I tried to be very, very light-hearted and joked with the technician that I always thought my breasts were too small for this. I never thought at 28 I would need this. I had it done and man, those are really very uncomfortable. I was sent to his office to wait. As he was walking toward the room he hollered for me to come out and follow him. He said that things were not looking good and I had 2 options but first he needed to do a more thorough ultrasound on both breast. When we went back in he walked me though everything that he saw. The tumor is on the entire right side of my right breast and took up almost the entire screen in complete blackness. He started down the breast in to the lymph nodes and found a large tumor in my lymph node closest to the breast tumor. He told me that he was concerned when he just seen the breast tumor but that seeing the tumor in my lymph node has him overly concerned. He told me that my options were to get an MRI which could give a false negative in which he would still request a biopsy even if it was negative, or I could just get the biopsy of both tumors now. He said that even if they are begin, that there would still be something causing the tumors and we would need further testing and he just kept repeating "this would need taken care of", which I assume he meant removed. He even asked me what I thought it was and when I told him just a blocked gland, he said that it definitely was not that. He actually told me that when he read my chart, seen my age, he said he honestly never thought for a second that this is what he would be seeing at all. I looked at him and replied "That makes two of us."

My biopsy will not be surgical, I am getting a vacuum core needle biopsy, so they will just take a big old needle, suck the tissues out and I should have the results within 72 hours. My biopsy is the 22nd- they only do Biopsies on Tuesdays and they already have this Tuesday booked. The lady that was scheduling me must have either had BC or known someone who did. She told me as I was leaving that the office had the best docs around. She didn't want to tell me it would be okay because frankly, she didn't. It's not like they just send every person with a lump in their breast for a biopsy and I can't even say lump because what is in my breast is a very large mass.

I am scared...I honestly, truly thought I was just over exaggerating this whole thing in my head to begin with. I thought that it was nothing. I absolutely never imagined that I could be facing the C word. Never.

I started to lose it when I left the office. I walked out to the car, trying to hold it together. Got in to the car and called Steve. I cried a bit, but not too much. I didn't want to overly upset him and he was trying hard not to do the same. Corin was next. She has seen my worst moments and knows the most intimate details about me losing Shannon that no one else even knows. I completely lost it with her. I was hysterical. I told her the story only being able to complete one word every other second. I felt bad for doing it to her, it always is her that sees me completely lose myself in my grief. But, it needed to be done. I needed to be able to run every worst case scenario though my head in that instance. She wished she was with me, but I was glad I was alone. I was glad I could break down on the phone and no one could see me. This is bad timing. Shannon's birthday is next week.

Next I made the drive to my Mother's. She was calmer than I thought she would be. She'd been there, though. She was in my shoes only a year younger than I with three small kids at home, too. She was diagnosed with thyroid cancer at 27. Throughout the next hour I told the rest of my sisters and Danielle. Danielle literally dropped everything, including my buddy, and drove over to get us dinner and just be there. It meant more than she will ever know. After we got done eating and her and Steve were occupying their minds, I had an overwhelming sensation of knowing this feeling. I had been here before.

It was only 6 and a half years earlier that I was in that stupid ultrasound room, pregnant with my first baby, and told I had to go for more testing. We got the worst news when the doctor walked us through the blackness on the screen of what would eventually kill my child. They gave us a 50\50 chance of her survival. As we left, wanting to break down, we put on our disguise to face our family. We weren't alone for dinner that day either. By the time we got home, my eyes were swollen, and I was drained. I was so exhausted I felt like I gained 20lbs. That is exactly how I was feeling right now.

Later, I couldn't help but research and read how bad it is to have a tumor in your lymph nodes so close to a tumor in the breast. I read how estrogen, which I have been taking for the past 2 years to help recover from the hysterectomy, feeds C and even though I am young, if I had a hint of C in my body it would enhance the growth. I read about benign tumors, only one of which matched my tumor size, and how that it would need removed.

So, just like 6.5 years ago, I am faced with this 50/50 chance. I could have C and it's possible that I don't. Surgery however, seems inevitable. I, like 6.5 years ago, also run every possible scenario though my head. What if it's too late? Will my babies grow up without me? Will I face chemo and losing my hair? How will I take care of Stephen and myself? What will this do to my marriage? How will we afford this? These questions will run over and over in my head for the next 2 weeks. It is not possible to not think of them.

Baby steps, though. We'll see in two weeks what will happen. And we will face it head on.