Life goes on!

So in attempt to create some normalcy amongst the chaos, my mom really wanted to go camping over Memorial Day weekend, which Friday was the same day I had my MRI. She had already been to Yankton to set up the tent and it was raining on her the entire time. We got to Yankton around 7 that night and my aunt and uncle were already there in their camper.
It was a lot of sitting around all weekend, as it was raining the entire weekend. We sat in the tent or camper and read all day, sat at the campfire that night. When I woke up on Saturday I was pretty sore from the surgery and a bit irritable from sleeping outside, not to mention, my mom snores. I just started crying and I couldn't stop. At this point, anytime someone looked at me, I would just cry. I couldn't think of anything else other than all the unknowns of the tests and where I was going from here. That afternoon I got a picture message from Steph who took a picture of Trennan's skateboard that he put a pink ribbon on...that got me alll worked up again because I feel sad that the kids have to deal with this too. They will have memories of this horrible time in my life that they won't forget either. He had also said that if I lose my hair, he will shave his head. No need for everyone to be ugly! I wouldn't let him do that.
So it was a very emotional weekend although nothing happened, it was just trying to encorporate something normal back into my life and it didn't go very well. It never leaves my mind.

More appts

When I met with Dr. Volz last week he had asked me if my thoughts towards a mastectomy had changed any. I didn't really think about it any further, but after he said that I thought maybe he thought that's what I should do. I told him that if I had the genetic testing and it turned out I had the mutation, I would lean more towards a mastectomy. So he set me up for genetic counseling and testing, with a plastic surgeon.
Today I got the results of the MRI back from Dr. Volz. I stilll have a lot of swelling in the area, which they suspect is what is showing as abnormal in the left breast. There is also a small spot on the right breast, most likely benign but I needed to have a biopsy on it just to be sure. Dr. Volz said he trusts the pathology report over the MRI that they got all the cancer in the surgery. I really don't have high hopes for anything- I guess we'll see after I do more testing.
I had the mugogram the following Tuesday after Memorial Day- I really didn't know much about it before I went, other than it was necessary to make sure my heart was strong enough to take the chemo. The people who gave me the test at the hospital were not very friendly either. Each time I meet someone lately I wait for the "youre too young to have cancer, you poor thing!" and then I start shaking and just look away and nod. Yeah, I'm well aware! thanks!
I had the genetic counseling, where she gave me about a 17% chance that the tests would come back positive, given the family history that we knew. She estimated that I was only at a 2-10% risk to even get it in the first place, given my age. But I'm not counting on anything! That test takes 7-10 days so I at least have that long before making another step. I was planning on this test as being the final answer if I'd have a mastectomy.
I also went to Sioux Falls to see a plastic surgeon. It was the fanciest doctor's office I'd ever been in. I was being squeezed in without a planned appt, but they said they would see me yet that day if I was available. When we got there, the young nurse, who was about 20 took me and mom back to the exam room. As she was going through my medical history, she volunteered that her family has the same clotting factor that I do. Crazy becuase it's the first person I'd ever met who had it, yet alone knew what it was.
The plastic surgeon went through the pathology report and I caught him up to speed on what tests I had already had and that I was still waiting for results on some of them. He explained the three different surgeries they could do- one being a tummy tuck that they use that fat and skin to build a boob- or implants- or a combination of the two. There's also all sorts of nipple reconstruction that can be done- mail order rubber ones and have them sewed on, or tattooed on. The combinations are endless! The funny part was when we were discussing implants, he said there largest size they had was the equivelant of three of the model he had in the office and that's as big as he could get them. I said- holy crap! my boobs are that big? to which he grabbed two handfulls and said, "well, i got two big handfulls and then a little extra." OMG this is hilarious- my mom's just sitting here listening and looking. I was really giving it my all not to start laughing!
He explained how the surgery would happen, if I chose to do so. He would work with my surgeon to do the surgery. I was way concerned about the amount of time required for a hospital stay for all of the surgery options except the implants. Could be up to 7 days in the hospital and extremely painful (from what I've heard). Janna told me that I should ask if they can use my butt and transplant that to make a boob. Very valid suggestion, I thought! And then would you say you could see my butt crack if the girls were coming out?
June 1st I had my PETscan to see if there was any other cancer in my body. The night before I had a strict low carb, high protein, which is the exact opposite of what I like! So I got myself a steak and my brother grilled it up to perfection. I never eat steak but it seemed like a good reason to! The day of the scan I had to drink a bunch of water before I got to the appt. Once I got there, they started another IV where they gave me more fluids. They then put me in another room where I had to sit and just "relax". The room was at the far end of the hallway, with two spot lights on the ceiling. There was a man sitting in the other chair in the room who was probably mid 30's-40, he was bald so I immediately tensed up not wanting to talk to him while we both sat in silence. He didn't say a word and was taken out of the room shortly after I entered.
When it was time for my test, I laid perfectly still in the tube for 45 minutes. Then the nurse told me the test results should be out tomorrow and they would call me.
Two days later I had my second biopsy on the right breast where the MRI showed yet another spot of concern. The little tiny lady doctor was using all her might to dig the needle into the right spot, it was deep against my chest wall so it was hard to get to. Once she'd get close, it would move and bounced around a lot- which she said was a good sign! Turned out it was a fibroadenoma, which is completely ok- not cancerous at all! They also showed me several large cysts in the right side on the ultrasound, wierd because I don't have any on the left!

First Trip to the Cancer Center

I got in to see the radiation oncologist at the Cancer Center the next day. Walking into the Cancer Center is stressful enough. I didn't feel sick and I was just pissed off at the world. I felt like it was a complete waste of time because I wouldn't be getting radiation for at least 6 months. I was also a little miffed that the Dr. seemed a little po'd at me that I didn't know anything about cancer or radiation. Not a real friendly guy. They explained that when the time came, I would have an orientation day with the radiation team. They would mark the area that would be radiated with small tattoo marks. He also made mention that I would probably be having chemo and that I needed to think about my future of ever having kids since the chemo would cause damage to my eggs. I don't know if I want to have kids! I'm way to young for that! I was totally freaking out because I hadn't really come to terms with the fact that I had cancer yet, and now I was needing to decide if I wanted to have kids- all in about 2 weeks.
I dropped Amy off at her work after the appt- she asked me if I had thought about freezing my eggs. I said that I really hadn't thought much about it at all- no other doctor had mentioned the fact that I may not be able to have kids after all of this is said and done. She also questioned me as to if I thought about having a second opinion about the cancer and treatment, possibly at Mayo Clinic. It was all too much to think about and I didn't want to deal with it. I had no idea where to even begin and whatever I decided to do, I needed to do it fast.
The next day I met the medical oncologist, that I had seen last year. Holy cow we waited hours to get in to see him! I was really getting honked off by the time he came in. I was concerned that since he was running so late that I would be hurried out the door, but he spent at least an hour with my mom and I going over everything. He broke the news that I was dreading- I needed to have chemo and yes I would lose my hair. I bawled through most of the appt. He went through my mammograms and showed the lump to me, which was the first time I had seen it. I was able to see both the regular mammogram and the digital mammogram, which looked like night and day. So my advice is to always get the digital mammogram! Mom asked the doctor about how do we know all the cancer is gone? I had what was called "multifocal cancer" meaning there were several small spots in the tissue around the actual lump that were cancerous. I wanted to make sure there weren't other spots that weren't taken out, but they believed they were all concentrated in that area. So I was set up for possible petscan and MRI the next day after my surgeon and he were able to discuss what I should do next.
I had a MRI the following day in Omaha, where the experts are in reading the images. That was an experience in itself. They set me up with an IV and there was blood shooting out of my hand and it was pretty disgusting. Even the nurse doing it was taken by surprise, she had hit a valve in the vein and it only went in partially. I told her I'm not normally queasy but OMG there was a 12 inch circle of my blood on the floor!
To do the MRI, I started out on my back and then they flipped me onto my stomach. This is the funny part, the nurse built up some materials that I would lay on, which included a large hard foam piece with two giant holes in it. She told me to crawl on, face down with my arms above my head and I just started laughing! I was like, are you serious? My boobs are going in those holes? She commented that no one has ever laughed like that before- I thought this was completely hilarious that my boobs were going to hang through holes. So after I got on, she reached from under the table to positon 'the girls' in the holes. What an experience!

One week follow up

Today I had my one week follow up with Dr. Volz after the lumpectomy. They told me all the "margins are clear" meaning they got it all. In my mind I imagine them taking a melon baller and just scooping it out- seems wierd. They also told me it was Stage 2- meaning it hadn't spread much outside the area it originated and that one lymphnode (the second one in the strand of three) that they took had microscopic traces of cancer. Still, my main concern was that I didn't want to do chemo, I started crying everytime it was mentioned. Dr. Volz said we'd worry about that later, but it was looking like I was going to need chemo and radiation. He set me up to see a radiation oncologist and a medical oncologist in the next few days for more information. I had previously seen a medical oncologist for my blood clotting problem when I had my surgery on my back last summer so I was relieved that I knew who I would be seeing. Amy had offered to go to these appts with us since it was so much information coming at me at one time and I was having a hard time keeping everything straight.
I returned to work the following Monday, as I was still in a lot of pain when I went for my one week appt.

Surgery day

I had to go in for pre-cert for surgery the day before during my lunch break. They did all the blood tests and went through my medical history, met with the anesthesiologist and did all the vitals what whatnot. I was hysterical through the entire process. Each time someone asked me why I was having surgery I started balling. They all tried to be encouraging and relax me by saying that everything would turn out ok and it could turn out to be nothing. "I already know it's cancer!" I kept telling them- I think they thought I was being paranoid, but I really already knew it was cancer. I had every right to be utterly freaked out!
So the next day was the surgery. Kim and Mom came with me. First thing off the bat, the hospital chaplin came in and talked to us. We all sat in the room and cried with her, in disbelief that this was even happening. Followed by the nurse, who left the room because she was getting emotional as well. We're a real bundle of fun!
Finally they came to take me to inject stuff for the sentinal node-business. I was waiting for this because they had told me that once they injected this blue dye, they could give me something to calm me down. I wanted to be sedated as early as possible, for as long as possible! This is what they do, you lie on a table and they take a needle and shoot blue die directly into the boob, just outside the nipple area. Surprisingly, it didn't hurt too bad. After it was over the doctor asked me to rate it on a scale of 1-10 with 10 being the worst pain ever- I rated it only about a 4- he said women have all sorts of different opinions, but there's a numb-er in the dye, so that eases the process. Once they get the needle in, they point left, then up (that was the painful part) and then to the right- a trifold of pain!
I got taken back to my room where they finally gave me something to chill out a bit! Shortly after that, they came to get me for surgery. I teared up as I made my way into another operating room- I've had way too much experience in there.
I remember waking up in the recovery room. There was a young nurse sitting by me and I kept asking what they were giving me for pain. I had bad reactions to morphine and I didn't want any of that, and for some reason I was feeling chatty and wanted to tell her all about it. I was hurting pretty badly and she was giving me everything she could for pain.
I got back to my room and Amy, Mom and Kim were there waiting for me.
I got to go home shortly after that as the same day surgery center was closing so they wanted me gone. I stood up for a minute to go to the bathroom and started throwing up. Went to the bathroom, came back and threw up. Mom went out to get the car to drive up to me, while I was in the wheelchair sitting at the nurses station, I started throwing up again, got it all over the nurse and myself. oops! sorry!
When we got outside, mom's car wouldn't start- it's because she backs into every oarking spot and jinxes herself. It's funny because when we got to the hospital that morning, I pointed out to Kim that she had backed into the parking spot in the hospital lot-so anyway, Mom called John to come jump her car and Kim came and got me.
Went home and slept for about a week...

Surgery scheduled

I met with the surgeon again today, Dr. Volz. He held my hand as he explained the kind of cancer that I had and what my options were to remove it. He said I had two options, breast conservation (lumpectomy) or to do a mastectomy- one side or both. I said I did not want a mastectomy as it seemed to be a small lump- measuring about 1 inch from what could be felt and measured on the ultrasound. My biggest concern was that I did NOT want to have chemo. I didn't feel sick, I didn't need it. Dr. Volz assured me that we wouldn't worry about any of that and get the surgery done first. They scheduled my surgery for two days later. Lumpectomy and sentinal node, which I still didn't know what that was at the time.

D- Day

We were interviewing candidates for my boss' position as the VP of HR. I had been involved in the process from the beginning, trying to keep everything pretty low key, so I was the only one directly from the HR dept. who even knew who was being interviewed and was asked to help with the entire process. I was sitting in on 8 hours of interviews with the management team, so I had a full day planned, and didn't have time to get breast cancer.
We had lunch delivered and had about an hour to spare as we wrapped up the morning interviews a little early. I went up to my office and checked my phone. I had just missed the call. I shut my office door and returned her call. Dr. Bashori got on the line right away.
She told me that she had gotten the results back from the biopsy and she was sending them to Dr. Volz office. She asked if she could set up an appt for me to visit with him about the results of the test and when would I be available. She said he would be able to see me yet this afternoon. I told her that I was busy the rest of the day but tomorrow would work. I asked her what the results of the test were, she hesitated and said that she didn't feel comfortable discussing it over the phone and that Dr. Volz would see me tomorrow and she would also welcome me back to her clinic to answer any questions I had. I pushed her further asking for what the lump was- I asked if I had breast cancer. She said yes. 12:15 pm May 4th, 2009- everything from here out would change. Even writing this out, after all the this time has passed, it still haunts me. I can hear the words yet and my heart races.
She told me that its extremely rare, which was the hold up on getting the results back. They wanted to be absolutely sure.
I got off the phone with her and called my mom at work. I don't really remember what I said, other than I told her that I had breast cancer. I called my sister and then called Tiffney, who I work with to come to my office and I had gotten the results back. She came down to my office within minutes and we shut the door and I just cried for what seems like forever. I couldn't beleive it, I still can't. But I had to collect myself and get ready to go downstairs and finish the interviews.
I stopped in Barb's office- my sidekick at work and told her. Even she teared up and I sat in her office and cried some more. I don't cry in front of people, especially at work but I couldn't stop! Then Mark and Roger that I work with came in and saw both Barb and I all tearey- eyed and I had to start telling people my recent news. I explained that I didn't know much, but that it was cancer. I'd be meeting with the surgeon in the morning.
Chris and Amy were in Chicago and mom and I were watching the boys since the previous weekend. When I got to their house that night, mom had already picked up the boys and Steph and Kim were there waiting for me. I didn't want to go in the house- I just sat in the car for a minute and cried before I went in. It was all downhill for the night at that point. Amy called that night after she heard the news and said that she was coming home. She said she was bored, but I'm pretty sure she didn't want to leave me there with the boys with everything going on.

Family History

That's the question of the year..is there or isn't there any? Immediate answer is No, nothing in the immediate family- mother, aunts, grandma, sisters is who the immediate concern. On Mom's side great-aunt, very end of her life, with a slew of other medical problems to coincide with that.
Dad's side? Steph did a little research to find out that its possible- all from very unreliable sources, that's the problem. Could possibly be that my dad's sister had a recent mastectomy, probably in her mid to late 40's right now. Another possibility is that his dad had an undiagnosed lump that was discovered before she died of other problems.
That's it! But that leaves me with a 2-10% chance of having breast cancer. Odds sounded pretty good at the time, but I'm also writing this two months later and I already know what the answer! and you probably do too...
Friday afternoon came and went. I left work early because I really didn't want to get that news while I was at work. I came home and Steph and I went to get pedicures while we waited for the doctor's office to call. Nothing. I tried to call the office at 5 and no one was home. I'd have to wait the weekend for the biggest answer of my life!