Monday, July 30, 2012

The picture that saved my life

This is the picture that saved my life. This is Mackenzie at a few hours old. My brother took this picture. I'm not sure I'd even been down to the NICU to see her yet. Not because I couldn't physically go, just because I was in a state of denial emotionally. It wasn't supposed to be like that. You are supposed to get pregnant, wait 9 glorious months, then have a baby and then go home with baby. That's not our story.

We got pregnant really easily. My pregnancy with Mackenzie was great minus my semi-high blood pressure which made the doctors nervous. I thought they were crazy. I felt fine. I took the test for preeclampsia twice and was admitted to the hospital once. The first test was negative but I never found out the results of the second test because my water broke at 33 weeks. It was shocking to say the least. I remember asking the nurse what it could be if my water didn't break when I was admitted and she said sometimes the baby can sit on your bladder. I PRAYED that I peed my pants (there's a first time for everything). Of course we all know I did not pee my pants. I went for an ultrasound and we called everyone we could.

The morning of Sunday January 10, 2010, I was all alone in my hospital room ("go home", I said, "nothings going to happen") and my stomach started to cramp. I was scared that something was happening to the baby. So I called the nurse and she came in and put me on the monitor. She gave me a little button to push when I felt pain (it looked like a Jeopardy ring in button) and I pushed that button every couple minutes, sometimes every couple seconds. There were no "normal" contractions. No one believed I was in active labor. The day nurse came on and told me I was having gas pains (can you get an epidural for that because I wanted one!) and I stayed on the monitor. The resident doctor finally came in and I was 5cm. 2 more than on Friday when I was admitted. She decided at about 8 am (after about 4 hours of me being in this state) that I should go over to the delivery rooms (from my postpartum room). I asked my husband (who arrived just in time) to call my parents and they wheeled me down the hall.

There is no good description for the pain you feel in labor. I tried to be as nice as possible but its hard to smile when you want to kill everyone you see. When I got to the labor room, I went to use the bathroom and felt the VERY strong urge to push. The nurse from postpartum pulled the red emergency cord (hi you're a nurse right? and theres about 10 in the room that's 1 foot away right? then is this really an emergency?). I got in the bed, the resident checked me again (10 cm! yes I was just 5 2 minutes ago down the hall), everyone was whizzing around me, the nurse from the labor room kicked out the resident doctor for freaking out and we were ready to go! My doctor finally got there and Mackenzie was born at 8:30 am. They put her on my chest and she cried. It was wonderful. Then they showed her to me again when she was all cleaned up and she was taken away. Once I was all cleaned up and given some juice and breakfast I kind of forgot that I just had a baby. I still kind of felt pregnant. Since I didn't have an epidural there was no evidence that a baby was just born AT ALL in that room.

Once I was moved back to my old room and friends and family started to visit, I was letting them all go down to the NICU with George. I'm not sure when I finally went down there. I felt like it wasn't really happening and I didn't really know how she looked. Maybe I was afraid that she was going to be so tiny and scary with all her cords and iv's.

It is the worst feeling in the world to leave the hospital after you've had a baby without a baby in your arms. I knew she was going to be okay but I wanted her to be okay with me. It is terrible to see your child have a feeding tube put in and hold her arms down while they do it or have an iv in her head or struggle in any way. But your very first child? It makes you question everything. The walk from the parking lot would make me angry. The color and pattern of the tiles on the floor made me angry. Why did we have to do this? Some nights we would leave and I would cry the second we walked out of the NICU doors until after we were home.

This is why I went for the physical that found my cancer. Because even though they told me that there wasn't a reason that this happened I needed to make sure that I was healthy enough to have another child. When you have a child that is born early or sick or both you question yourself as their mother and wonder what could you have done better or differently. I seriously checked my karma log to see what I did or didn't do in my life that made me deserve this.

I write a journal to Mackenzie pretty much every week telling her what she did new or where we went or anything exciting that is going on. I started it the day I found out I was pregnant. I always felt a little bit bad or maybe guilty that I write to her a lot about how she is the greatest and shes the one that made me a mother and how I'll always be so grateful that shes my baby because what will the other kids (God willing) think when they read it? Will they think I don't love them as much? But now I can tell them, without her, there wouldn't be you. Mackenzie saved my life.

I still believe that everything happens for a reason. You don't always get to know the reason at first. Sometimes you really have to look hard. But now we know. Without going through the experience (and to me, trauma) of Mackenzie being premature we would have gotten pregnant again without even thinking about it and we would be having a much worse discussion a year from now. I am so lucky.

Thursday, July 26, 2012

The Surgeon

Today was my second meeting with the surgeon. My mom went with me and I'm really glad she could be there because she's been through this before and knew what questions to ask. I'm not going to pretend I didn't zone out a time or two during this appointment. At one point I was thinking "why am I even here? Who's appointment is this?". Its easy to be in denial about what is going on. I think I'm bouncing around the stages of grief (denial, anger, bargaining, bereavement, acceptance). I think I went through bargaining before I found out my diagnosis for sure. I went through it in my head: what I was going to say when the doctor said it wasn't cancer it was _____, how I was going to feel and how I'd probably cry more than if they told me it was cancer. I try to spend a lot of time in acceptance because its easier to keep your eye on the prize in that stage.

I like my surgeon a lot because she says thinks like "cotton pickin" and she called my cancer cells "fuckers". I appreciated that because that's how I feel about them too! This first picture is the results of my biopsy which we all ready knew. Invasive ductal carcinoma. The most common type. Its estrogen and progesterone positive and HER-2 negative which is a good thing (if anything about breast cancer is a good thing).

I'm adding this second picture in because this is the surgeons drawing. Have you ever seen that many boobs drawn on one paper before?

So basically my options are lumpectomy and radiation or mastectomy and maybe chemo. The chemo is going to depend on if the cancer spread to my lymph nodes. Also if you can see the drawing on the top right of the paper with the star and a circle around it- that represents the lump. Part of the lump is cancer and part is pre-cancerous cells. How many of each will determine if I need chemo or not and will also help stage the cancer. Right now the surgeon thinks I'm at stage 2 based on the size of the lump alone but if the lump is mostly pre-cancerous with just a little cancer then it could be stage 1 if it hasn't spread to the lymph nodes. Confused yet? I'm surprised I can remember all of that!

I made the decision to have a mastectomy. The biggest reason I want the mastectomy is because of where the lump is and how much they would probably have to remove. The surgeon finally made me look at my mammogram and you can really see how bad it looks. The lump itself is less than 3 cm (approximately) but on the screen looks enormous. And as my surgeon said, she doesn't want to leave me looking like a donut. The results of the genetic test will determine if I need to have a mastectomy on just the cancer side or both sides.

The next steps are to get the results of the genetic testing, get an MRI on Tuesday, meet with the plastic surgeon on Wednesday and with this surgeon again on Thursday. Surgery will probably be scheduled for August 22 and I will have to stay 1 night in the hospital (I think they call that a vacation!). 

Wednesday, July 25, 2012

Just keep swimming

I was watching Modern Family and started laughing (I mean who doesn't?) and I thought "I'm glad I can still laugh at things". Then I started tearing up. I wish I could go back to 3 weeks ago when my only worry was not passing out during a blood draw at my physical.

I worry that people are thinking that just because I'm trying to keep a smile on my face it means I'm not totally overcome with grief and terrified of this diagnosis sometimes. I'm just really trying to not let the grief and fear overcome me and take over my life. I feel like if I can keep myself mostly optimistic then I'm winning. My bff Christen sent me a story today about a sportscaster named Scott Stuart who finished a race 3 days after he completed chemo for stomach cancer. He said "cancer isn't an excuse to stop living. It's even more of a reason to start." And I completely agree. If this doesn't show me that life is short then I don't know what will.

I scrolled down the top page on my iPhone (maybe its called notifications) and I saw this...
I felt so sick to my stomach. Sometimes I forget that I have cancer ( that's easy to do with a 2 year old around) and then when I remember it smacks me in the face. Although I'm reminded a lot during the day when people see me for the first time or are confirming what they heard from someone else. I've had pretty great reactions and I still feel so supported. I'm glad that I can still laugh with friends (even sometimes about cancer) and feel normal. That's all I've been hoping for!

I got this letter in the mail today telling me my mammogram was abnormal and "hopefully" my doctors all ready notified me but if not then get on it. Yikes! I hope people don't really have to be pushed towards treatment. I'm running towards it with open arms!

I'm so ready for this appointment tomorrow. I know she won't have the results of my genetic test yet but at least we can come up with some sort of plan. My mom is coming with me and I'm really happy she'll be there because she has sadly become an expert in breast cancer and will know most of the "lingo". I have my pink binder all ready to go!!

Tuesday, July 24, 2012

Cancer-Day 2

I'm so glad that I decided to tell people about my cancer. I feel SO was overwhelming to have so many messages flooding in. Thank you all so much! I'm really glad I went back to work today and got back in the swing of things. Its nice to work and not have to think about whats coming.

After work we went to Barnes and Noble. I went to look for cancer books and George and Mackenzie went to play with the trains. Someone had a terrible idea to put the pregnancy books next to the cancer books. How mean! Sometimes that's the most depressing thing to me...I can't get pregnant for at least another year best case scenario. The good part is that I get at least a year to lose all that weight I was supposed to lose in the last 2.5 years!

Also how crazy is it that there is an ENTIRE wall for dogs and cats and pets and cancer gets about 10 books. This is what happened when Mackenzie was born; I found one book about premature babies and hundreds of books about babies born on time.

(You can buy a book to test your dog IQ too...but I'm sure there's a reason its only $7)
I'm also thinking about starting yoga. I've never done it before but I know its supposed to be relaxing and it's exercise. Win/win! I just quit Fitness First after about 2 years of not going. I just don't feel like working out after a full day of work, making dinner and taking care of Mackenzie. But I think something like yoga would really help during cancer treatments.

The emotional toll of waiting for test results and even waiting for my mammogram appointment was much worse for me than actually finding out it was actually cancer. And surprisingly I've been sleeping pretty good- I just need to go to bed earlier. It feels like when you're first pregnant and you know you're pregnant but you aren't showing yet and you can't feel the baby move. You know the baby is there but you can't feel it in there.

I'm looking forward to my appointment this Thursday; at least I'll get some more answers. The genetics test results will probably give the most answers in terms of what surgery would be best for me. I took the cover off my phone tonight (or it fell off...its the only thing thats kept my phone from exploding from the 67 times I've dropped it on the floor). This is a picture of the inside of the case. Kate Spade really knows me!

Monday, July 23, 2012

When its cancer/the 20 percenters

I got the news today I was expecting/hoping not to hear. Its not ever easy to hear the words "its cancer" even when you think its coming. The more I think about it the more I think how lucky I am that I decided to go to the doctor when I did (I haven't had a REAL physical in about 10 years) and that I picked a nurse practitioner that does breast exams. I'm really lucky that I put off getting pregnant until after I went to get a physical "just in case" there was something wrong. It's all pretty surreal still but I am super ready for whatever is to come.

So why am I making this so public so early in the game? For a couple reasons. First I need to rally the troops. I need every single spare thought/prayer you can give. Next because I want to keep people updated on how I'm doing and because I'm nosy and I always want to know every detail! Lastly, writing is therapeutic for me. It helps to write down what I'm feeling because I'm so terrible at saying it out loud. I sometimes try to keep emotions/feelings in and in this situation particularly they need to be OUT.

What can you do to help? Besides thoughts/prayers, put a damn smile on your face. I can't take the sad/I feel terrible for you face. I know I have cancer and I know what it means, your sad face doesn't help me AT ALL. Also please try to refrain from saying "its going to be okay". Can't stand it. It ranks up there for me when people say "she deserves that" (not meaning cancer- think trips, expensive presents, winning the lottery, ect). I want to hear "we're going to kick this cancers ass!" or any other combination of words along those lines. I know it's going to be okay. Lastly, you can continue to be my friend. I know this is hard to talk about or have someone tell you all the dirty/gory details of cancer. Some days I'm sure I'll want to tell the whole world what this or that felt like or how I really feel and some days I won't want to talk about cancer AT ALL. I just need continued support no matter what mood I'm in. I want to be able to continue to live my life and be happy in spite of having cancer. Having cancer is just like having a pimple; its annoying and people will talk about it, but eventually it will go away and life will move on.
I really truly appreciate everyone’s thoughts and prayers and understanding that calls, emails and texts
may go unanswered some days. I will know a lot more on Thursday after my next meeting with the surgeon. Until then I'm creating my "Cancer Binder" (if you know me, you know how much I LOVE my binders!). This cancer is SO going down!

Waiting/maybe I was accidently told

Its my late day to work today (12pm-830pm) and I kept hitting my snooze. Around 945am my primary doctors office called and the nurse practitioner I originally saw 2 weeks ago was calling to check on me. I told her I was okay and just waiting for the pathology report to come back. She told me she was sorry, she was shocked at the direction this was going (she told me 7/11 that she thought it was a cyst). I thanked her for finding it and sending me to those appointments because what if she hadn't! Then she told me that her office wouldn't be treating me but they would get all the reports and I would see the surgeon and oncologist and blah blah breast cancer. So we hung up and then I called the surgeons office.

The receptionist told me that the report wasn't in my file and that they doctor would call me TOMORROW with the results. I started crying "are you kidding? I'm waiting to hear if I have cancer and no one can talk to me today?". Then she decided she could email the surgeon to call me. Oh wow thanks! HI You work in a breast surgeons office...I'm pretty sure this isn't the first time a crazy lady has called to request results. UGH.

Then I called back my primary care doctor to see if she really did have the pathology report or she was just assuming (like I am) that I have cancer. The super nice receptionist took my information and told me the nurse practitioner would call me back. Why don't people realize how terrible this is to have to WAIT!

Saturday, July 21, 2012

The beginning

I decided that I finally needed to find a primary care doctor and made an appointment for July 11. I hadn't had a physical in about 10 years...they could find something HELLO!! During my exam my nurse practitioner did a breast exam which I thought was odd but went along with it. She stopped in one perticular area for too long and I knew she found something. She told me there was a lump and I needed a mammogram AND ultrasound. I scheduled my appointment for July 19 and hoped for the best.

On July 19th I went to have the mammogram and ultrasound. It was a LONG week to wait! During the ultrasound the radiologist told me that "they" were "very concerned" about the lump and she wanted me to have a biopsy done right then. I was sent back in to the waiting room while they got ready for the biopsy. I grabbed my phone from my little locker and went to the bathroom and broke down into sobs. What was going on?! Finally I thought I had pulled myself together enough to wait in the waiting room when my mom came back (she works in the hospital) and I just bust into tears all over again. I told her about the biopsy and kept asking "how could this be happening to me" over and over.

The biopsy wasn't as bad as I was picturing (either was the mammogram...GO GET ONE LADIES!). The only bad part was that the doctor was on one side and the ultrasound screen was on the other. The only thing for me to do was close my eyes!

I was referred to a surgeon and went on July 20th. She was very nice and kept using a lot of words my friends, family and I were trying to convince ourselves we didn't need to use-like cancer, radiation, chemo, surgery, ect. I took the genetics test for the breast cancer gene (BRAC/BRAT) which uses scope by the way so its pretty awesome and easy. My husband and I left the appointment with a prescription for blood to be drawn and an MRI scheduled for Monday and hope we would hear something by the end of the day (we didn't!).

This state of limbo is pretty terrible. I think most people working in the cancer field probably haven't had to wait for a pathology report to come back before and maybe thats why it takes so long. Why can't these people work 24/7???

So this is the beginning of the journey...of what we don't know. Hopefully nothing but probably something.