Sunday, January 29, 2012

Day 1-17 - Crap it's Breast Cancer

This blog is going to help me get through what is going to be one tough year. I am starting this as a way for me to heal, vent and also to allow my friends and family to see what breast cancer and treatment is all about. It's a no-holds barred look at the ups and downs of what I am going through. It's also a way to communicate with me and know updates when I am too fatigued or sick to reply to emails or phone calls. I am happy that you are going through this journey with me.

Let me start at the beginning...

I was breast feeding Elaina in October when she started to stop feeding on my left breast. I knew that my left breast was not the producer of the two so I thought nothing of it. Once the breast returned to its normal size, I noticed a lump near my nipple. I thought nothing of it and thought it was just a blocked milk duct. When it didn't go away, I called my primary doctor and went in at the beginning of November. He didn't think that it was anything of concern and told me to try cabbage leaves and then call him back if things weren't going away. I was slow on the horn to get the cabbage from the store... but I eventually tried it twice and even binding my breasts. But the lump still didn't go away. I did this in November and December. Finally in January, I thought enough was enough and made another appointment to see my primary doctor.

January 4 - I went in to see my primary doctor. He again thought it was a blocked milk duct, but the lump wasn't hurting and it wasn't red. I knew that it couldn't be mastitis. So Dr. B decided to order up an ultrasound of my left breast and also send me to physical therapy to see if ultrasound would break up a galactacele.

January 5 - I went to my first ultrasound appointment. I had done this before because as soon as I started going back to work with Elaina the year prior, I had a blocked milk duct and had to go through physical therapy.

January 6 - I went to the ultrasound appointment. The radiologist took a look at the pictures right after the u/s and decided that she wanted to do a biopsy on it. She said that it didn't look too suspicious, but she wanted to rule everything out. She thought that it could be a fibro adenoma or a lactating adenoma. That night Dr. B called me and tried to reassure me that everything was going to be okay and he didn't think it was anything big. I scheduled the biopsy for Tuesday, January 10.

January 10 - I went in to get my biopsy done. That was a real treat. First they did an u/s on the lump and while I was there, they found another one. However, they didn't know if it was the same one or a totally different one. They numbed the area and then stuck the biopsy needle into my breast. It was attached to this machine that just "sucked" the tissue samples into a jar. So there was only one very large needle that went into my breast. Apparently they took out 9 samples. I wasn't afraid, but I wasn't going to look at the needle until after it was done. When the biopsy was complete, I am glad that I made the choice to look later. I think I would have passed out. :) If you have to get a core biopsy, don't look at the needle before hand. Afterwards, my breast was sore. It got nice and black and blue. I couldn't lift anything heavier than a telephone book. Brad and I were joking and asking "what kind of telephone book" as the white and yellow pages are growing smaller and smaller each year. I didn't expect to hear any news from the pathology report for at least three days.

Day 1 - January 13 (Friday the 13th)
I took the day off. This was a planned day off and we decided to go to the Oregon Zoo. We got passes to the zoo from our close friends, Tracey and Eugene... so since it was a clear day (not warm, but not windy) we decided to chance it. The last time we went was for Zoolights in 2010 and before that it was the day I went into labor with Elaina! We had a rocking good time and saw a whole bunch of animals.

When we got home, the girls were tired, so we put them to bed for their nap. At about 3:30p is when I got a call from Dr. B. I was downstairs alone in the kitchen. I remember exactly what he said... "I got your pathology report back and unfortunately the news is not good. You've got cancer." I was numb. I said, "Okay." Definitely not the news I was preparing for and obviously I didn't know what sort of questions to ask. I did manage to ask, "What next?" I was then told that I was going to get a follow up call from a general surgeon to go on to the next step. I asked what's treatment going to be like. He said that I would most likely have to go through chemotherapy and radiation. I never thought to ask the name of my cancer, how big it was, what the receptors were, if I should stop breast feeding Elaina on the right side... nothing. I hung up with him.

I went upstairs to tell Brad that the doctor called. I told him matter of factly that it tested positive and that I had breast cancer. He was in shock. He came downstairs and we just stood there dumbfounded in the kitchen trying to soak up the news. Needless to say, I don't remember much after that. I waited for the doctor to call back and started writing down questions to ask when someone called me back. In hindsight, I should have called my doctor back.

So... jump ahead... no one called me back that night. No one.

However, one person called me and she was an unexpected call. At 8:10p I got a call from some unknown number. I answered it expecting that it could be a doctor calling me. I hear a "Hi Holly. This is Desiree B. I just heard the news... I am so sorry" and then sobbing on the other end. Until then, I hadn't shed a tear. All of a sudden at her voice, I just started sobbing. It was my ob/gyn. Her husband is my primary doctor. Dr. B was talking to his wife that night and said that he had to tell a patient that she had breast cancer and he thought it had something to do with lactation. Then Desiree started asking who's her OB. That's how she found out it was me because I was her patient too. She told me later on that she was so upset at her husband for telling me on a Friday and two the Friday of a long holiday weekend (MLK). She told me that I was going to be all right and that I caught it early. We talked for awhile and she told me that the surgeon that Dr. B referred me to was really awesome. She also said that she was going to personally call her on Monday morning to get me scheduled ASAP. I tell you I have never been treated so well by one person. I love Desiree... she's such a spectacular doctor! She told me to give her a call anytime if I needed to talk and that I now had her personal cell phone. Wowsers! I must mean a lot to her... or made a great impression on her. We talked and chatted for awhile. She gave me the advice not to go online searching too much otherwise I'd get overwhelmed and the what-ifs would set in. I told her that I just went to a few sites but that was it. Her husband was pretty mad that the surgeon's office didn't call me when he found out that night.

I decided that night that I wanted a double mastectomy. I wanted bigger boobs!

Day 2 - January 14
I had a night's sleep and now it was time to start sharing the unfortunate news. I had decided to wait to tell family about the lump just in case it was nothing. But I knew that because of the new events and information, I needed to tell the parental units.

First up... Mom and Vern. I called them first and just missed mom. I got Vern on the phone and I am very fortunate that I got him and that I could tell the news to him. I think that God was on my side because I don't think that Mom would have handled it as well with me telling her over the phone. I sobbed while I told Vern that I just got diagnosed with Breast Cancer. (Even now, the tears well up in my eyes as I write this). I shocked him. I got him choked up. For a moment he didn't know what to say. I gave him the chain of events leading up to the present. He said he didn't know when he should tell mom. I told him to wait until after she got home from painting a client's house. I knew that she would leave as soon as he told her and I wanted her to go on as planned. I know that this pained him. But I do admire him for holding on to this news. I know it was hard for him because he went to see her during lunch (she forgot her lunch). But I wanted her to be home and her safe environment during the news.

Second on the list, Dad and Karen. This one was really hard because Dad lost his second wife to breast cancer. It was equally hard because Brad wanted to talk to Karen about their "Save the Date" card for their upcoming wedding. So I had to sit and wait nervously for him to be finished. When I got on the phone with Dad, I managed to spit it out and tell him that I was just diagnosed with Breast Cancer. I tell you, each time I said breast cancer, it got easier and easier. Saying it outloud made me come to terms with it. Dad took it in stride over the phone, but I don't know how he took it after I hung up the phone. I do know from later accounts that he called Mom's house and spoke to Vern.

Third on the list was Brad's parents, Bill and Evelyn. Brad made this call. It was a little easier when I didn't have to talk.

Later that afternoon, I got a call from Mom. She sounded okay. But she was shaken. She wanted to know everything I knew. I told her all the events leading up to the present. I think she was in shock. By now the shock was starting to wear off and I was slowly coming to terms with the whole thing.

Last breast feeding for Elaina. I decided to wean because I didn't know if my right breast was affected or if I should be breast feeding since I had cancer.

Day 3 - January 15
In-laws, Bill and Evelyn came up for the afternoon and took us out to lunch. We didn't really speak much about the cancer diagnosis, as we didn't have much to go on. But we all knew it was on our minds. It was just nice to get out of the house and not think about mortality for awhile. Plus we had yummy italian food at the local mom and pop restaurant.

The newness of the news was still there. The kids were napping when Brad and I were talking on the couch. I broke down in tears and said I don't want to die. I don't want to go anywhere. I expressed my fears - death (not to die, but to die too soon), how I wanted to see Amelia go to kindergarten, drive, go to college, etc. I talked about my fears of how Brad would want to leave me. They were all fears. He talked about his... how he doesn't know anything about girls and how would he raise them if I wasn't around. Would he keep the house? Would he sell it and move closer to his parents? Once we realized our fears and voiced them, we felt so much better. There were so many unknowns out there and we had absolutely no answers except the fact of, I've got breast cancer.

All I can say is thank goodness for kids, because with Amelia and Elaina around it didn't give us much of a chance to think about things.

Day 4 - January 16
First thing that morning I pulled my boss aside and told him that I was just diagnosed with breast cancer. I can tell you that it was not the kind of news I he was expecting to hear. I was so nervous to tell him. I told him that I don't know much right now but I will be going to appointments and tests. I asked him to just keep it to himself right now as I don't know what's going on except that I have BC. He agreed and said that he will not share any of this news. He said that he was honored that I shared this with him, as I am under no obligation to do so. But I wanted to in order to protect my job. I told him that I will be filing FML.

On pins and needles all day waiting for the surgeon's office to call me. They finally called me mid morning and told me the next appointment time was the following Monday! What! No I couldn't wait that long. So I said schedule me for Monday next and then call me if there's any cancellation. About an hour later, I got a call saying there was a cancellation and that I could come in at 2.30 the next day. (I don't know if Desiree had called and pulled strings or what...) Another hour elapsed and I got another call. They had to push up my appointment to 12p... same day. I said not a problem.

Later that night I called one of my old co-workers, Shellie, who just went through breast cancer treatment. I told her that I just got diagnosed with breast cancer. She said "Oh no!" So I picked her brain for about an hour. I was proud of myself. I didn't shed a tear during the conversation. I sat poised with my pen as she went over her treatment program and why she decided to do what she did. She told me that I should get a second opinion and gave me her doctors names. I vowed to call first thing the very next day. I felt so good and so empowered after speaking with Shellie. I was happy because now I felt like I was taking control over this disease. For the past 72 hours I had felt out of control and not knowing what was going on. I got doctor names, how they presented things, was told how OHSU, where she went worked and operated. I was getting excited because I felt like I was doing something. There were too many hours of waiting and not knowing what was going on.

Day 5 - January 17
During my lunch break, I called OHSU's (Oregon Health Sciences University) Breast Center. I managed to make an appointment with the Nurse Navigator for the next day. However, I had to wait until Thursday, January 26 to meet with the breast surgeon. OHSU has a breast conference and every Thursday they present cases to the surgeons, oncologists, radiation oncologists and the reconstructive teams. In the breast conference they figure out the best possible treatment for the individual. So I had to wait until the next week because I was cutting it too short for the pathology report and samples to be sent to OHSU from the other facility. I hated to wait, but it was for good cause...

Meeting day with the general surgeon. We got there at 1130, both Brad and I. We waited for two hours to meet with the surgeon, Dr. A. She was great and had a copy of my pathology report. My cancer was called "Invasive Ductal Carcinoma." The cancer had started in the ductal areas of my breast... where the milk is carried to the nipple. This was good because it is the most common type of breast cancer. The receptors were positive for estrogen (70%) and progesterone (less than 5%). The HER 2-neu test was pending. We went over the pathology report and the options for treatment... lumpectomy and radiation; mastectomy, radiation and chemo; bilateral mastectomy, radiation and chemo. She felt under my arm and noticed that I had an enlarged lymph node and wanted me to get a MRI. At this point in time, I already had a MRI scheduled at OHSU for Thursday. I felt better. I now knew what I was up against. I now had a name of what my cancer was/is. Before I left for the day, I asked about reconstructive surgery and who she worked with. I arranged an appointment with that doctor for the next day.

Since the general surgeon and my ob/gyn work in the same building, Brad and I went down to her office. I love that office. The receptionist remembered me and greeted me with a big warm smile. I asked to see Desiree and I got to go back there. When she saw me she gave me a great big hug. We went into a room and she asked how my appointment went. I told her the news. She said that she already looked at my file. Hee hee... doctor privileges. I had a question for her that the surgeon didn't know the answer to. I wanted to know if I needed to take my IUD out, Mirena, since it does release some progesterone hormone. She said yes, I should. I said okay, but I was going to wait until I find out more information. I then found out how she got my phone number the week before. She said that when she found out it was me, she called labor and delivery at the hospital to see if they had my number. Wow... sneaky. But I love her for it. We talked a little bit and then said our goodbyes.

That night we had told our good friends, Tracey and Eugene, the news. We were going to see them the next night for dinner, but thought it best that we not tell them in a restaurant.

I was feeling better and better about my diagnosis... little did I know that I had much more stuff in store.

Day 6 - January 18
Happy 40th Birthday, Brad!
We spent some of Brad's birthday in two meetings. The first meeting with with the Nurse Navigator, Christine, at OHSU. She mapped out how OHSU works. We went over the pathology report a little more. We mostly talked about the steps for treatment... if this, then that. We talked about checking axillary lymph nodes, sentinal biopsies, genetic testing, etc. Christine was great. She answered all our questions without knowing too much of what my cancer was. We even had to cut our meeting a little short because we had a meeting with a plastic surgeon. But Christine is basically our point of contact if we have any questions, need scheduling done (don't know who to call to schedule the appointment), etc. We left that afternoon making certain that on Thursday Jan 26 we were going to meet with the surgeon, plastic surgeon, oncologist and the genetic counselor. I was feeling really positive.

On to our next appointment. We saw the plastic surgeon. He took a look at me and gave me his thoughts. I told him that I wanted to have bigger boobs when all was said and done. I wasn't too sure about him from the get go because his first remedy was to do skin grafting from my back. He said that if I needed radiation, he wouldn't do tissue expanders. If anyone knows me well enough, I don't have enough skin to go around. It seemed like he wouldn't even consider it. I don't want to look like a patchwork quilt. No siree! But all in all, he said what he could do. We talked about different types of implants and if he thinks saline is better than silicone. We discussed nipple reconstruction and also tattooing. These are all things that I have to think about. We discussed nipple sparing surgery. He hadn't done that nor did the surgeon he works with. That's something Brad and I talked about on the right breast. But now thinking about it, I won't be able to feel anything really in the right breast, so why spare the nipple? Take it all out and then I will have nipples that match.

We left and went to pick up the girls at daycare. Lucky us... no naps! LOL. We brought them home and they took a one hour nap and then they were ready to go out for birthday dinner with Auntie Tracey and Uncle Eugene at Olive Garden! Yum.

Day 7 - January 19
Back to OHSU for tests! The first test they wanted was a mammogram. Duh, the lump is there. Duh, you won't be able to see anything in my right breast... it's still lactating. It was really funny because they were squeezing my right breast and milk was shooting all over the machine. I told the mammographer that she ought to be prepared for that. The same thing happened to the left side, but it was more like a little pool of milk versus it shooting across the room. They took a total of 5 pictures of my breast. I could see the lump in my left breast and the little calcifications which could be an indicator of cancer. However, in the right breast it was all white. Couldn't see a darn thing.

Next I had another ultrasound of the lump. They quickly took measurements of the lump because I was already late for my MRI. The radiologist looked at the lump and then shooed me to the main hospital for the MRI.

The MRI was very interesting. First off, they couldn't get a the IV in my vein, so I've got a nice black and blue spot on my right arm (still, though it's turning yellow). They ended up giving me the IV in the left arm. They found a good spot. Next I had to lie face down with my breasts hanging down in two holes. That was nice. I had my hands up above my head and I felt like I was Superman flying high. They backed me into the machine and took several baseline images without the contrast. If you have never been in a MRI machine, it's really loud. There's lots of banging. Then the lady told me that she was going to push the contrast in. I could feel it coursing through my veins. About 60 seconds into the process I felt very nauseous. I squeezed the little ball to indicate I was not doing so well. They didn't pull me out of the tunnel. I figured, I could sit it out. I just concentrated on anything BUT throwing up. I said it's only 5 minutes. I can do this for five minutes. Finally they said it was all complete. The technician came in and said that she heard me press the button and she looked at me to see if I was flailing around. If I was then she would have taken me out of the machine, but she didn't want to because that would mean that I would have to have the test all over again. I said that I got very nauseous and she said that is one of the side effects. They contrast has to be pushed in really fast. She said next time I have to have a MRI they can sometimes push the contrast in a little slower. She said she'd make a note of it on my chart. After that I was done.

Since I had been shooed out of the u/s so quickly, I decided to stop back and see if there was anything else that I needed to do. The radiologist sat down with me and said that she looked at the preliminary results of the MRI. She said that there was something suspicious under my left armpit and that she wanted to do an axillary fine needle aspiration biopsy (FNA). Uh oh. However, she said that my right breast looked absolutely clear. Hooray! So she decided that the next step would be to schedule a PET scan to see if the cancer had gone throughout my body and to see if the surgeon wanted me to get a FNA. Wonderful. Then I got stuck in rush hour traffic. So I had the good news bad news.

Day 8 - January 20
So I was called on Friday to get the PET scan done. It was scheduled for Tuesday, January 24. Then I was told that they weren't going to do the FNA at the same time. Instead they wanted to tentatively schedule me for the FNA on Thursday at 10a. The doctors wanted to look at some more things and wanted to know the results of the PET scan. They also didn't want to subject me to any more testing if they didn't have to. I was freaking out. I didn't really know why they wanted a PET scan. I didn't know if they suspected the cancer had spread all over my body. I was really, really scared.

Later that night we went to a friend's house and I got a call from Shellie. She said that PET scans are normal and they order them all the time. She went through a CT scan, but I am allergic to iodine, so that's why we skipped to the PET scan. That calmed me down. If it was routine, I was happy with that... to know that I wasn't singled out.

Day 9 - January 21
Nothing really to report. It was a normal day. We celebrated Brad's birthday with his family.

But secretly I was becoming a hypocondriac. Every twitch, every ache, I felt like it was the cancer spreading. I was becoming really restless and my mind started to wander and go to places where it really should not have gone.

Day 10 - January 22
Time to start my new 48 hour diet. I needed to eat a low carb diet for the PET scan. The PET scan is really interesting. The contrast is radioactive glucose. What happens is they inject you with the stuff, make you wait, then sit you in the machine. What cancer likes to "feed" on is sugar or glucose. So while you're in the machine, where ever the cancer is, it will glow. So hence the low carb diet. Carbs are sugar. What did I have to eat that day? Eggs and chicken stir fry for dinner with a little bit of white rice. The stir fry was really good. I think I'll make that again.

Day 11 - January 23
24 hours before my PET scan and to tell if the cancer has metasticized or not. Brad had to go take a drug test for his new employment, so the kids were in daycare. I decided to have lunch at home where I could decompress. I had been feeling really stressed about the week ahead. I tell you, I sat on our staircase looking at the one year pictures of Elaina and Amelia and just cried. I was so freaked out about what the results could be. I didn't want to think negatively, but that's all I could think about. After my cry I felt better and was able to face the rest of the day.

Dinner consisted of grilled steak salad... and I sneaked in two cookies. That was yummy!

Day 12 - January 24
Morning of the PET scan. I hadn't eaten since 8:30p the previous night. All I had that morning was water. Got to the hospital at 7:15. Appointment was at 7:30. They called my name. I went back to a little room. It consisted of a chair for me to rest quietly. I was asked the obligatory questions. Then the person left the room but before she did, she asked which arm I wanted my butterfly needle in. Then she came back with a little suitcase (make up caboodle size) that looked like it was holding stolen plutonium or something. Before she injected me, I asked her what the machine looked like because I didn't want to get claustophobic. She showed me the machine. It was a bed and then had two round things around it. The first donut shaped hole was the CT machine. The second one was the PET scanner. In between each round was a space of about a foot. I said I could manage that. I just didn't like the MRI. She also said it was quiet and all you could hear was the whirring.

Amy, my technician, asked which breast was affected and opted to put the contrast in my right arm. She said that just in case she doesn't get all the contrast in the vein, it won't pool in the armpit and cause for more concern. I thought that was brilliant. Then she put the radioactive stuff in me and left me alone for an hour while I read. I felt like Mr. Burns on the Simpsons! After an hour, she told me to pee and then it was onto the bed of the machine. The actual test only took about 10 minutes. The longest part was waiting for the contrast to do its stuff. My scan was "eyes to thighs". I laid on the machine with my hands over my head looking up towards the ceiling. As I passed through the CT machine, I could see the equipment whirring and circling around. After the CT I was passed through the PET machine. Pictures were taking incrementally. First my thighs, then my abdomen and so on and so forth. Finally I was done.

I hopped off the table and Amy said I did great. I asked what the next step was and she said the radiologist will get the images and then I could call if I wanted to. I said okay and parted ways. Brad and I decided not to call. It would freak us out.

Day 13 - January 25
The day passed uneventfully. We got no calls from any doctor. I tried getting a message to my nurse navigator, but got a kick back stating she was out of the office for the next week. I wanted to know if I still needed to get the FNA done.

I told Brad that no matter what happens... it could be worse.

Day 14 - January 26 - Day of Reckoning
I left work early... at lunch. I got home and made Brad call the Breast Center to see if I had to go for the FNA, since it was still tentative. The doctors were still in their breast conference so the receptionist paged them. Yes, they still wanted the FNA. Now I was nervous. Brad reassured me that the FNA test would be good. Meaning that results were inconclusive. I was still nervous.

Got there at 10a for the FNA. They brought me back. The sonographer said that they ordered another test and they wanted to look at my neck. Oh shit! That was not good. That meant that there was a lymph node that was abnormally big and the cancer had spread. I started to freak out... and not just a little, but a lot. I had read somewhere that if it gets above the collar bone it's inoperable and it's not good. I immediately jumped to stage 4 cancer and I was going to die. This was all in my head.

The radiologist came in... the fellow... Dr. Chan. He said that the lymph node was suspicious and that they wanted to biopsy it as well. I started crying and freaking out... not an all out panic attack, but enough for him to stop and ask if there's someone he could get. I said yes, get my husband Brad. Dr. Chan returned with Dr. Oh and Brad. Brad later told me they didn't say a word to him and he was in sheer terror. He thought the cancer had spread all over my body. He saw me in tears. Then Dr. Chan told him that they found a lymph node in my neck and they wanted to do a biopsy on it but the rest of my body was clear of cancer. Brad says when he heard that, all panic went away and he was relieved. The doctors said that they could reschedule the biopsy at a later time. I said, no, I want it done now. So they proceeded with the FNA. First they took the biopsy in my neck. They numbed the skin and then took a needle and shoved it in my lymph node and took out cells. This was so less evasive than the core biopsy on my breast. They took three needles full. Then they rushed the sample over to the pathologist next door... or down the corridor and through a door. Following that, the repeated the process with the lymph node under my arm. Apparently there are 3-4 lymph nodes that are clumping together forming a nice lump under my arm, so they only had to take one biopsy... three samples, but they biopsied one lymph node. Once that was done, it was time to go down to the Waterfront to the Center for Health and Healing for my appointment with Dr. Naik. She's the breast surgeon.

We finally get into our appointment about 20 minutes late. I'm doing okay. Then the fill in nurse navigator comes into the room to introduce herself. She wants to make sure that I am okay because she heard that I had a hard time on the hill at the FNA. It was at that point I broke down in tears again. The concern and caring just overwhelmed me. Everyone was so concerned about my well being. She left and said that she would check in with me throughout the day (she didn't). Then there was another knock at the door. This time it was a medical student. She wanted to know if it was all right to come in and observe and watch. I said yes it was okay. She's gotta learn sometime, right?

After she left it was another few more minutes before I saw Dr. Naik. She was really nice. As soon as she sat down I felt comfortable. She asked me how I was doing because she heard that I was a wreck up on the Hill. That's when I burst into tears again. I apologized. She said it was not an issue and that it was very overwhelming. She asked if I needed time. I said No! I want to keep moving on and know what the plan was. So in between tears, sniffles and gulping for air, she proceeded. She went over the pathology report again. She said that I had no other cancer growing in my body except for that one lymph node in my neck. She said that my cancer is very treatable and they are very highly confident that they can get all of it. Dr. Naik mapped out my treatment plan - which would be the most effective for my type of cancer and how it's spreading...

1. Neoadjuvant chemotherapy which would be about 3 months (more about that later). Neoadjuvant means that the chemo would be before having the surgery. Following the last treatment, there would be a 4 week resting period.
2. Surgery. She recommended that I do a mastectomy. I had already planned on that. They would also take out my lymph nodes under my arm. At that time they may start the reconstruction phase (more on that later). After the mastectomy, it would be another 4-6 weeks of healing.
3. Radiation for 6.5 weeks. This would be on the left breast, under the arm and the neck where the lymph node is.
4. Endocrine therapy. That's where I would take some drug for the next five years because my cancer is estrogen receptive. This may throw me into early menopause.
5. Breast reconstruction.

I tested negative for HER 2 -neu. So that's a good thing. It's thought that if you test positive for that, it means that it's a more aggressive type of cancer and can go more places. So there's one for me.

We asked why can't we flip the chemo and the surgery around to get the cancer out now. She was worried that since my cancer had gone to another area of my body it's best to get the chemo going now. It will stop any "floating" cancer in my body from forming somewhere else. Also if I did the surgery now, there would be a 4 week delay in starting chemo. I knew there was a reason, but I had to ask. I asked how big my tumor was. She said that it is measuring different depending on the test. Dr. Naik said that it looks like there's two, but they've kind of condensed together and since my breast isn't big, it's encompassing my whole breast basically... measuring anywhere from 7-10cm at the longest part. Another reasoning for the chemo first is that they hope that they can stop the tumor from growing and actually make it shrink, thus saving more tissue for reconstruction. I like that idea. She says that in most cases it will shrink, sometimes it stays the same but rarely does it grow any bigger. We were also worried because the skin color was turning red on my breast. She said that she's not worried about it because it looks more because the skin is being stretched out rather than it spreading to the skin. The tumor is so close to the surface.

We talked about mastectomy of the left breast only versus a double. If I lose the right one, it decreases my chances of getting cancer in the right breast at a later date. We talked about nipple saving mastectomies (right breast). She said that she can do them, however, when you save the nipple it means that you leave some ductal tissue there, so the type of cancer I have could in fact come back. I do like the fact that she does entertain nipple sparing mastectomies. The other surgeon doesn't do them.

We discussed the different types of incisions she does. For the left breast, it will be an incision about three inches across... maybe, but it will be close to where the nipple would be... and if I have nipple reconstruction, then the scar may not be as visible. For the unaffected breast, if I have a prophalactic mastectomy she would do the same thing. Either way, she will try to leave the littlest incision as possible - that she feels comfortable with - but get all the icky tumor out. I am hoping that the chemo will shrink the tumor.

Before Dr. Naik left, I asked for a request. I asked if they ever take pictures of the tumor. I want to see the nasty evil thing growing inside me. The medical student says they do it all the time if a patient requests it. Dr. Naik said that I can request it and that before surgery she can put it in her notes. I want a picture... not the thing in a jar soaking in formaldahide.

When she left, I felt better. But I still didn't feel so great... since I hadn't eaten all day and I was still an emotional wreck.

As an interlude, I had the social worker come in, Kerry, to talk to me about support groups and what not. I balled again. Again, I was so overwhelmed with all the support I was getting to help me get through this crap. They were all so genuine, too. Taking time out of their day to meet with the latest victim. :-)

Next up... Dr. Thacker. She is the reconstructive surgeon. She was so nice and soooo chipper. By that time, I had a huge headache and was ready to call it a day. We talked about getting a double mastectomy. I told her straight out that I wanted bigger! LOL. She said that's good. We talked about the timing of the reconstruction surgery. Because of my size and the fact that I want to go bigger, she suggested tissue expanders. The expanders would be implanted in me at the time of the mastectomy. Each week they would inject saline into them, expanding my skin. Think of them as place holders for my soon to be great boobs! Due to the fact that I would need radiation, she suggested that I have the tissue expanders in place throughout radiation. There could be tissue scarring and that could hinder the way the new boobs fit. If I did the implants before the radiation, the implant could shrink or I could be lopsided. Her best idea is to leave the expanders in for the duration of radiation, then wait 3-6 months to see how the skin changes. When I meet her again, I'll ask her again why she suggests waiting... and why the 3-6 months and why not put them in before radiation? At that point in time, my head was throbbing.

With not feeling well at all, I sent Brad out to find Dr. Luoh, the oncologist. What a sweet man. He's so cute! He's very nice and asked me how I was doing. He said that Shellie, my friend, had emailed him and that I was coming in. Then we got down to business. He said that my treatment would be 8 rounds of chemo every other week. For the first four rounds I would get AC or Adrioamyacin and Cytoxan. For the second half of chemo, I would get 4 rounds of Taxol. Each spaced out 2 weeks... if my blood work came back okay. AC has a risk of leukemia and congestive heart failure and the taxol could cause neuropathy or numbness in my arm. But the risks outweigh the benefits. He asked me if I wanted to be in a clinical study. I passed. That meant more tests (CT and MRI scans). I want the tried and true. Following chemo, the next day I would need to get a booster shot called Neulasta. This would boost my bone marrow to keep me healthier because at a certain point - about a week after chemo - my white blood cells drop. Chemo kills the bad cells and also can kill the good cells in my body.

Side effects from chemo: hair loss, mouth sores, nausea, diarrhea, menopause, fatigue. These are all things that I understand and knew was coming. However they have a pill or medication for everything, but one medication comes with another side effect. We shall see how my body reacts.

I told Dr. Luoh that I wanted a port placed in me. This will reduce the need to constantly stick me with a needle. They can just use the port to administer the chemo, do blood draws, etc. I like that. And the port is under my skin (but you can still see it). There's a little tube that goes straight into my artery so the chemo will be pumped quickly into my blood stream. The next thing to do is to schedule an echocardiogram and blood tests to see if I am anemic and if my blood clots appropriately. But I was in no mood to schedule the appointment that day. I just wanted out. By this time it was 4:30 and my appointment started around 1:20. Dr. Luoh asked when I wanted to start and I said yesterday. I want to get the ball rolling because I am that much closer to being at the end of this ridiculous charade.

I finally made it out of the room and as soon as the door opened and I got some fresh air, I perked up. On the way home it was quiet because I wanted to focus on not throwing up in the car. We finally got home around 5 and Brad dropped me off. It was at that time I just sobbed. Sobbed in the heaving sort of way. I told Brad that I am not sobbing because I am sad, I am sobbing because I am so relieved. I feel as if a huge weight had been lifted off of my shoulders. I now knew what I was dealing with, I had a treatment plan and it was beatable. It was an awful weight to be lugging around for two weeks. Now that the unknown was finally known, I felt so good. I also mourned for the life I once had, but also rejoyced in the life that was soon to be... I felt like I reclaimed my life again. Brad left me alone. I ate, took some ibuprofen and crawled into bed to relax.

My first call was to my dad. I knew that his call would be quick and easy (sorry mom). I told him that it was stage 3, outlined what they were going to do and that it was beatable. I caught it in time. The call was hard for him, I know. (love you dad!) When Brad got home, he fixed the girls dinner, I had dinner in bed and then he called Mom and Vern. At that time my head was feeling much better and I was able to talk to them and reassure them that I was going to be fine. If you want to know what they were feeling, you'll have to ask them. :-) Next it was Bill and Evelyn. I went to bed early because I was so tired.

Day 18 - January 27
It's a good day. I went to work in the morning happy of my diagnosis and certain I wasn't going to die. Today I was going to get a call from all the doctors to set up appointments for blood work and an echocardiogram.

Got a call from Brooke the nurse navigator who I met the previous day. She was concerned and wanted to know how I was doing. I told her I was doing quite well and told her that I came home and just sobbed for the reasons of knowing a huge burden had been lifted. She was so happy to hear I was doing better, as she was concerned for me. I asked her a few questions and she said that she would put in a note to get the echocardiogram scheduled for me and where to go for lab testing. I also asked her if it would be all right to miss a session of radiation, as that's 5 days a week for six weeks. I told her that I have a wedding to attend in September. She said that radiation is cumulative and if I miss a session or two at the most it won't be the end of the world. Plus she said that weddings and big family functions are important and I should go to it.

Shortly after that, I got a call from the Breast Center - Amanda (who's been with me since the beginning scheduling appointments) and she got me an echo for Monday at 2.30p. Yes! Things are now moving! Wonderful news. Later in the afternoon, I got a call from Dr. Luoh's office to schedule my blood work. I could walk in on Monday and get the labs done. Sweet. No appointment necessary. Things were finally clicking into place. I was regaining some of the normalcy.

Day 16 - January 28
Wig shopping! We told Amelia that I was looking for new hair kind of like her Rapunzel hair she had for Halloween! She kept asking me if it was my new hair or if it was my old hair she was seeing. Too cute.

Day 17 - January 29
Today has been a great day. The days right now are easy as I now know my diagnosis and know what's in front of me. This morning I woke up and did some work from home. I even dyed my hair. Those pesky gray hairs were bothering me. I don't have a lot, but they were there. I figure if I am going to lose my hair, I will want to go out in style! Plus I don't know when chemo will start, but from what I hear it's about after the second treatment that I will start losing my hair. That gives me three more weeks and I am NOT about to have gray hair for three more weeks.

Been making more calls. I called some close friends of ours and told them the prognosis. They are happy that I called and are more than happy to help out now that Brad is going back to work, so they know that Sundays will be a chore when I start chemo. I love my friends.

I also called my ob/gyn because her husband is my primary care doctor. So she's been worried about me and wondering what's going on with my treatment. So I talked to her a bit. I'll be seeing her on Tuesday as I want to get my IUD out (Mirena) since it carries a little progesterone and my type of breast cancer is minutely receptive to progesterone.

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