Friday, January 30, 2009

My Surgery

Friday, January 30, 2009

For some unknown reason, I thought that I would be Superwoman and be able write about my surgery the night of or the day after. It has taken until today to feel well enough to use a keyboard. When I wrote the update yesterday, my left arm hurt so bad that I wasn't able to type with it. So it was a VERY LONG one handed post. But I am feeling (a little bit) better today so I think I can attempt to write about the surgery.

It snowed and sleeted on Tuesday night. When we woke up on Wednesday, my 13 year old's school had closed for the day and we were unsure of what was happening with the girls daycare. So we decided to drive all three of them to Grandma and Pop-pop's house for the day, that way we wouldn't be worried about them if by chance the daycare decided to close down while I was in surgery. We dropped of the girls and picked up Nickie (Grandma) and Chris (my husband), Nickie, Jordan (read previous blog on Jordan Knight) and I were on our way to the surgery.

We got there about 9am and my appointment was for 9:30am, but it gave us enough time to fill out all the paperwork and have a seat. I was called to back to the suite and sat in a little recliner (pre-op). I was given a gown to wear (opening to the back, didn't they know what kind of surgery I was having?), a pair of booties and a robe. I put all my belongings in the bag (excluding Jordan) and my stuff was locked up in a locker. Then a nurse sat next to me in my blue recliner and started my IV. Anna was the nurses name, she was very nice, I asked her if she was any good. She told that she had been told that she was. She did something nobody else had, she gave me a numbing shot to give me the IV... Huh, except that numbing shot probably hurt more than the IV, but it was a nice thought. Another nurse, Pat, came over to me to hold my hand when she heard that I was a needle baby. She held my hand with one hand and rubbed my hand with her other while asking questions about my kids. She was very sweet too. The IV wasn't so bad. Another woman brought Chris and Nickie back to sit with me until they took me to Radiology.

When it was time for Radiology (at 10:30am) I walked up the steps with another nurse, she turned me over to the Radiology nurse. It was so funny, there I was with my gown, booties and shower cap on (holding Jordan) sitting in this waiting room and all around me were women with scrub shirts on and jeans, slacks and high heels. Such a dramatic difference from them to me. I was called in and brought to an ultrasound room. The nurse was going over the procedure and said to me that I would be getting four injections of lanacain before the four injections of the radio-active isotope.

"No," I said, "Dr. Alley said that I wasn't allowed to get the lanacain, cause it might cause the isotopes to not get picked up."
"Oh no dear, we wouldn't do that without giving you some kind of numbing."
"I love you." Was all I could say. I had the numbing before, I know that I could handle that, I was good. She laughed at me and got the "box" that had the isotopes in it.

The box was a heavy metal with radio-active stickers on it. It really looked like a fire protective lock-box. I started to laugh. That was until the Radiologist comes in. I have decided that Radiologists are so NOT my favorite doctors. Really none of them have very good bedside manners. Except Dr. O that did my MRI biopsy. This doctor just seem to be inconvenience to even be there with me. She explained the procedure to me: I was going to receive four injections of lanacain for the numbing around my nipple, then four injections of the radio-active isotope in the same places. Then they would insert 2 guide wires in my breast and inject blue dye into the area of the lumpectomy. I questioned the 2 wires. Dr. A only told me I would need the one wire (in Bob) because she cannot feel it. But the Radiologist insisted that it makes it easier and faster for the surgeon if both masses have guide wires... okay...

I knew that I was in for a rough road when the Radiologist said, "The area around the nipple is more sensitive, so just grip something and lets do it."

"1-2-3" she shoved (yes it felt like a shove) the needle in and HOLY CRAP!! The burning!!
"1-2-3" AAAAGGHHHH!!!
"1-2-3" breath Laurie Jo, just breath!
"1-2-3" my fingers hurt from gripping the bed in my left hand and Jordan's legs in my right.

"Okay, no lets do the isotopes." What? Don't I get any breathing time.
"1-2-3" I stared at the ceiling body clenched down to my toes... nothing.
"1-2-3" Nothing, thank you God.
"1-2-3" I knew that he had to be saving me from this pain.
"1-2-3" I breathed.

Okay, now the guide wires. First there is the injection of lanacain, it burned but nowhere near the nipple pain. Then she injected the blue dye in to help Dr. A find the margins... Oh lord that stung. then the wire. "You will feel some pulling and tugging" The guide wire was put into the exact location of the Alien and she was verifying this while working the ultrasound at the same time. Then she did the guide wire for Bob. This time, I was really numb from all the other lanacain, that the dye didn't hurt, but when she pushed the wire in, I had a throbbing pain that felt like she hit a nerve or bone. It wasn't getting any better. She said that she would try again and pulled the friggin' thing out!! I just wanted a little more lanacain at the site it was hurting. Then she decided that I didn't need a wire in Bob. That she would just have to find him. WHAT??
"No, you need to put a wire in Bob, that was the only one she actually wanted a wire in."
"She can find it."
"No," I said, "She couldn't feel him, you need to put the wire back in."
"Fine," she tried to find Bob again on the ultrasound, "Well now that there is the lanacain, I cannot find it."
"You need to," I said. What I was thinking was - Your the idiot who took him out.
She proceeded to putting the wire in as close to the titanium clip as she could. Then she told me that they were going to do a mammogram to see if they were in the right spots. The wire in Bob continued throbbing at a high pitch pain.

"You have got to be kidding me." I said when she left me alone with the nurse.
The nurse started to walk over to me to tape down the 6 inch wires that were poking out of my breast. We walked over to the mammogram room and I told her that I was not going to be able to help her at all with this. If I looked down and saw the wires, she was going to have to either pick up my puke or my body from the floor.
"Don't worry sweetheart," she said, "you close your eyes and I will take care of everything."

After the mammogram she had me sit in a chair in the mammogram room to make sure that the pictures were coming out and I started to cry. I hurt everywhere! She handed me a few tissues and I blew my nose. She was going to have me sit down and wait until the Radiologist could take a look at the mammogram and see if the wires were indeed in the right place. I thought, "Please don't take me back in the waiting room with the women in scrub shirts, they will not know what hit them!" They put me in the "Quiet Room" probably thinking it best to keep me away from them too. After about 10 minutes I got the all clear to go back downstairs into the surgery suite and wait my turn. We picked up Chris and Nickie on our way back. I got back into the surgery suite about 11:20 and my surgery was scheduled at 12:20pm. Bob's wire was still hurting me but I kept saying just 1 more hour and they are going to put me out, FINALLY!!!

Dr. A came and checked on my and said that I got an extra wire, huh? I told her the whole story and she had the look on her face that they were incompetent too. She told me who my Anesthesiologist would be and that she LOVED her, she was awesome. She explained the procedure to us once again. She was going to do a lumpectomy, then she was going to make a small incision under my left arm and take out my sentinel nodes. Those nodes would be tested and if they turned out positive then she would have to remove all of my axillary lymph nodes. If that was the case, then I might need to be put under general anesthesia because the procedure is more invasive and painful. Then she rushed off, I met my OR (Operating Room) nurse and was told that we were just waiting for the Anesthesiologist. I met her and they told me to give my husband a kiss and we were off. I hugged Nickie, and kissed Chris and handed him Jordan, and they told me that I could take him with me (Jordan that is) and me, my surgeon, nurse, anesthesiologist and Jordan walked down to the operating room. I said hi to everyone and they wanted to hear the story about Jordan which I obliged them. Dr. A took the Geiger counter out and tried to find my sentinel nodes. It looked like one of those microphones from the 70's that didn't have the foam head on it. She was upset that there hardly any activity in my lymph area but my breast lit up with sound. She kept shoving the thing into my armpit (not to hard to hurt). One of the women in the mask (I think it was Anne) said, "We can put Jordan right up here with you." Then placed him by my head.
"We should really take a picture of this." I said.
The anesthesiologist said, "I'm going to give you something that might make you a little groggy." I was looking at the Dr. A trying to find my sentinel nodes. I looked up and my vision got blurry for a second, "I don't think I like this." I thought.
The last thing I heard was someone saying,"We don't have a camera dear."

I started to wake up and it seemed to be a lot of movement around me. I was going in and out. I couldn't quite place where I was. I have flashes. Someone saying, the nodes were positive. Someone asking me if I was in pain. Someone gave me a pill to take. Was it Vicadin? Someone asking me if I was still in pain, another pill to take. I opened my eyes long enough to see someone waving to me from across the surgery suite. Was that Chris? Does he really expect me to wave back? Why wasn't my body moving? Oh my god my left side hurt? Everyone just kept talking to me. Just let me sleep, please don't talk to me.

They made me move from the bed to the recliner. I honestly don't know how I got there. I assume I walked, but I don't remember it. After I was sitting, the nurses let Chris and Nickie over to me. Everyone just kept talking, I couldn't make anything out, please stop, please stop. I did hear Chris tell me that the notes were positive and they had to take all my lymph nodes from under my arm. I looked down and someone was trying to show me how to use the tube and drain that was now attached to my body. The nurses finally walked away for a minute and I started to cry.
"This is too much." I cried, "I can't do this. It is too much." Through my tears I could hear my mother in law crying. I felt like everything was just breaking down with me. Chris had me rest on his shoulder as I cried.

I don't know how I got dressed, I really don't remember getting dressed or putting my glasses back on. Did I have them on during the surgery? Were they on during recovery? I don't know. We decided that the little ones would stay with their grandparents that night and we took my 13 year old home with us because she would probably have school in the morning. I had not eaten all day and it was now 5:30pm and so we stopped by McDonald's for dinner. Probably not the best after surgery dinner, but it did fill me up.

After we got home Chris was able to tell me more...

The surgery should only have taken 1 hour and 15 minute tops. When Dr. A went to Chris in the waiting room 2 1/2 hours later, he knew something was wrong. The sentinel nodes were had cancer. I had to be put under general anesthesia so they could scrape out all of my axillary lymph nodes. A drain was put in to help with the draining. I have a tube from under my arm to probably about my knee and at the end of the tube is a reservoir which kind of looks like a clear bulb syringe. While this is in place I cannot take a shower or get it wet. I have to drain the plug every 8 hours.

It took me until Thursday night to make it to the toilet and back without almost passing out or feeling nauseous. The pain in my left side is horrible. It feels like I have been scraped from the inside out (essentially that is what happened). I cannot even feel my breast, I am thinking that my underarm is trumping it. I have an incision about 3 inches long on my breast. It really doesn't look that bad (the form of my breast). And I have an incision from one side of my armpit to the other, and a drain stitched in near the back of my under arm. It is bad. It feels bad. But at least I am over this part of the hurdle. I am done with this part. Every day it does get a little better.

For those that are asking what kind of drugs to you get? Nothing. I take 2 Tylenol with codeine every 4 hours. Now (two days later) I am down to one Tylenol w/ codeine and 1 extra strength Tylenol. Also I need to record how much crap is drained out of my breast and call it it daily. When I get to less than 30 ml a day, I get to have it taken out... This morning I had 75 ml. I still have a ways to go.

I put some of the surgery quirks and my pathology results in another blog. This one is long enough already.

Thursday, January 29, 2009

Surgery Update

Unfortunatley, I am not able to get into my surgery. I am in a lot of pain and just want to update everyone on how it went. I promise I will get into the surgery on my next post.

Surgery was yesterday (Jan.28). There was cancer in my sentinel nodes so my surgeon had to take all my axillary lymph nodes. I ended up going under general anesthesia when they found this out. It took me a LONG time to come out of anesthesia, but I was sent home at about 5pm. I am in A LOT of pain, no bleeding through bandages so that is good. I cannot get to the bathroom and back without having to lay on my bed from the nausea and pain.

I have a drain coming from my underarm that leads into a bulb that I have to drain every 8-10 hours (yes it is disgusting). But I'm alive. My left boob doesn't hurt at all, but I think it is getting trumped by the left arm, chest and underarm.

I will write more when I can use my arm better, just sitting up this long is getting me sick again...

Tuesday, January 27, 2009

Ode to the Left One

January 27, 2009

I was trying on sports bras last night. I needed a new one to wear after the surgery tomorrow. The one I had was not going to work (or latch in the back). As I was running from the bra aisle in the Wal-Mart to the dressing I thought of the life of my breasts....

I started "budding" as I heard it put so delicately, when I was in 5th grade. I grew in uneven. The left one grew first, I knew it had to be because I was a side/tummy sleeper and faced my left so I knew that it must because I was squishing my right breast under my body weight, so I trained myself to sleep on my right side/tummy until my right one grew in. Finally it did (I later found out that this is normal and I didn't HAVE to change my sleeping... Who knew?)

I have had a love/hate relationship with my breasts. I hated them when I first got them. I swear I was the only girl in a bra. It was aWHITE bra too, no buff, or nude bras for me back then. I had a shirt I got as a hand me down and it was a beautiful pretty peach, it was ruffly and a soft, and I didn't realize it was so sheer until I took my jacket off in my 5th grade class and everyone laughed at me (at least all the boys did). When I was in 7th grade I forgot to wear my bra one day at Catholic school, (it was gym day, so I had a thick white t-shirt under my white peter-pan collar button up blouse, so you really couldn't see anything). But I freaked, I told my best friend, excused myself from class, called my mom to bring me my bra. She did (in a brown lunch bag, thank god) and when I returned to class to find that "Bra less Bitch" was written on my desk. My "Best Friend", her friends and I all ended up going to Sister Mary Denise's office for that one.

As I got older I started to like them more. I never liked wearing a bra, that is a device you just get used to. When women find a bra that is "so comfortable" it isn't comfort they are feeling, it is just not-as-bad as the last one you had. But as they grew, I found I could use my breast to my advantage. These "ladies" as I liked to call them, seem to get really looks from boys, then guys, then men. My sister was jealous that my "ladies" were always a little perkier than hers (that is until babies and breastfeeding). I was a dancer (ballet, tap, pointe, hip-hop and jazz, so keep your mind out of the gutter) and where it was sometimes hard to get a costume to fit properly (there were numerous costumes I had to sew a bra in them, so my ladies wouldn't POP out during a performance) in the end, I always felt like they enhanced my looks. In the bars and clubs, I could turn quite a few heads and had quite a few drinks bought for me, I am sure that my "ladies" helped me.

After I got married and got pregnant, the real love fest for them started. After the birth of my first child, they did something that to this day I think is amazing... They fed her! Okay, it was hard and hurt like hell EVERY TIME she latched, but I was able to feed my child. Nobody else could do this for my baby, just me. I breast fed my first daughter until she was 11 months old and my second until she was 6 months (her decision, not mine). Sure they were a little less perky, sure gravity and engorgement set in and they hung a little lower, but these were mine. These ta-tas were beautiful, flawless... until December 5, when I found the lump.

Over the past month and a half they have been squished, poked, pricked, punctured, bandaged.. You name it. Tomorrow they will be cut into, the left breast, which was the favorite breast of both my daughters when they were babies, will be cut into, and a part removed. I want to remember them as they are now. To remember them before they were flawed. When they were all mine. Before Alien and Bob decided to lay claim and turn my whole world upside down. I want to remember my ladies, in all their glory.

Isn't it funny when you are growing up and your breast start to grow and you are excited over every new cup size you get into? Once you are an adult, you cringe every time you have to try on a larger bra and you are excited when you loose an inch or a cup. Then one day you find a lump and you pray that after it is all done, you will still fill the "comfortable" bra that you own.

So this is for you, my left breast, cause after tomorrow you will never be the same. But you know what, I will love you regardless.

Saturday, January 24, 2009

Telling the Kids

Jan. 22, 2009

My husband and I had discussed waiting to tell the kids until we had a plan of attack. I didn't want to just put out there that I had cancer and not tell them how we were going fix it. So Thursday night after dinner (and desert) we sat down with all of our kids (the 13 yr old, the 3 yr old and my 13month old) and had a family meeting.

My 3 yr old turned to me before I started talking and asked me how my day was.
"Mommy how was your day?"
"My day was VERY long."
"Anything neat, new or 'terestin?"

Side note: We have 3 questions that are asked at every dinner:
1) How was your day?
2) Anything neat, new or interesting?
3) What did you learn today?
My 3 year old loves to ask me these questions.

"Well actually, yes."
"What Mommy?"
"Well remember when Mommy's boobie hurt? Well they did a test on it and they found out that Mommy's boobie is sick." Then I looked at my 13 year old, "It's cancer."
Her mouth dropped and eyes got big, "Cancer?"
"Yeah."
Just then my 3 year old who was walking around the kitchen (not sitting in her chair like I asked) walked into the chair and hit her nose. She started crying. I pulled her too me and sat her on my lap so I could see if her nose was hurt, it wasn't so I hugged her. Then my 13 month old got mad cause her sister was in my lap so she started wailing too.

Needless to say, it broke the ice.

When I was finally able to let my 3 year old go, I stood up with the baby and continued, "I am have two spots on my breast that are cancer. Wednesday, the Doctor is going to go in and take them out. After that I will have some chemo and/or radiation, then I'll be okay."
"So it is breast cancer?" the 13 year old asked.
"Yes."
"Will you loose your hair, my friends mom had breast cancer and lost her hair."
"I don't know, I hope not."
"But you will be okay?" She asked.
"Yes, I will. I will probably need some more help around the house and with the kids, the radiation can make me really tired."
"Okay."
And that was it...

The next morning, my 3 year old asked me if my boobie was still sick.
"Yes it is."
"How does it get better?"
"They are going to take out the sick part." I explained sitting on the floor with her trying to put on her shoes.
"Is it going to hurt?" She tilted her head to the right.
"Yeah, a little"
"I don't want you to hurt Mommy."
"Remember when you had your tonsils out, it hurt for a little bit, but then you were okay?"
"Yeah."
"It is kind of like that." I gave her a kiss.
"Mommy, I love you sooo hard!"
"I love you so hard too!"

Thursday, January 22, 2009

My Surgeon

January 22, 2009

Oh my goodness it was a LONG day!

My husband, Chris and I woke up this morning, and went through our normal routine. Walked the dog, got the kids off to Daycare, but instead of going to work, we were going to see the breast surgeon. We got there at about 8:40am. My Mother-in-Law met us there.

Side note: My husband and I had discussed having his Mom there. She had seen an episode of The Doctors on breast cancer and they said when you speak to the surgeon, you should bring an advocate with you (someone that was NOT your husband, husbands never really listen, and tend to tune out). After discussing it, my husband and I agreed that if we brought anyone with us, it needed to be his Mom. I knew that she would definitely asked the questions I would be afraid to ask. Meaning there might be some questions that I don't want to ask in fear that I would piss off the Dr. and then she would take it out on my poor ta-tas. (I know that this is probably a stupid thought, but that is what I was afraid of). When I asked her, she said that she would be honored to be my advocate on this.

So manned with our questions and notebooks in hand (okay my Mother-in-Law and I had notebooks) and the three of us went back about 9:15 to meet the surgeon. She said hello, she was in her mid-fifties (I am guessing) and went over my history with me. Once again, like many doctors before her, surprised that I came upon this lump myself. Then she looked over all my mammogram, ultrasound, MRI and pathology reports stopping to highlight items she thought important as she read (wasn't she suppose to "review" my chart before she met with me? Wasn't that one of the reasons that I didn't get to keep my Friday appointment?). Then she asked me to come with her and she took me to an exam room and did an exam on my breast. She looked surprised that both the Alien and Bob were so close together. "Well," she said, I can get that with one lumpectomy. That is great news, we don't have to do a mastectomy." I felt my options go out the window....

I got back dressed and met my family in Dr. A's office. When she returned (from what I assumed would be reviewing my films) She laid out our plan of action....

She wants to do a lumpectomy. She believes that she can get to both of them at the same time. She would take both of them and an extra 1/2 inch border around the two and check it for clean edges (meaning no cancer along all the edges). This incision will probably take off some skin as well since the Alien is very superficial (close to the skin). A guide wire will have to be inserted prior to the surgery into Bob so she can find him, but since the Alien is palpable, she will just cut him out. Then after she finishes with the two of them, she is going to make a small incision under my left arm and remove 1 or 2 of my sentinel nodes (these are the lymph nodes that get rid of the waste in my breast). While I am still asleep, they will freeze them and check them for cancer. If they have no cancer, she will close up. If there is cancer in these nodes, they are going to take 10 - 15 more up in my armpit. If there is cancer then I will get chemotherapy and then radiation. If there is not any cancer in the sentinel lobes than I will receive radiation only. Radiation would start two weeks after the surgery and I would have it 5 days a week for 6 weeks.

How they find the sentinel nodes is pretty interesting. About 2-3 hours before the surgery they will inject me with radioactive isotopes and then with a sophisticated Geiger counter they will find which lymph nodes have the most radioactivity (meaning get the most waste) and it will be the ones they cut out. Huh.. Who would have thought?

Then came time to ask my questions... My questions are in light pink.

"What about my right breast and the Lobular Neoplasia?"
"Why would I cut that out? It is not cancer."
"But, I thought..." (Dr. A cut me off here)
"It is not cancer, it is a marker for cancer, it is a marker only and we don't have to worry about worrying if you get cancer, you already have cancer"

Side note: Dr. A is an excellent, detailed surgeon. One of the best in her fields, but not that great of a bed-side manner. I guess she is good enough, she can afford to be a bit cold.

"What about birth control? Currently I am using the Mirena, a progesterone only IUD for contraception."
"That needs to come out. You have hormone receptive cancer. It feeds on progesterone and estrogen so you cannot use any form on hormones for birth control."

"Okay, that leads me to my next question, Will I be able to have a healthy pregnancy when this is over?"
"You CANNOT have any more kids."
"What?" This is where I think I started to lose control of my breathing...
"You really should not have anymore children. You have hormone receptive cancer. You will probably end up taking a hormone blocker. If you increase the hormones in your body, if feeds the cancer." I think she back-tracked a little bit, cause she saw the shock on my face.
"But no more at all?" My husband and I had decided in November before this all started that at the end of this year we would start trying for one more. When we found this cancer, we decided when this was over and done, that we would celebrate by having one more little one to complete our family. This would fill our table which holds six. Now I was being told that I would not be able to have anymore children?? This was too much. I felt the tears welling up.
"I will tell you what, if after 2 -3 years on the hormone blocker and your tests are clear, then we will discuss taking you off the medicine so you can get pregnant. But you will be watched like a hawk. You really need to decide if you want to have another baby and put yourself at jeopardy or enjoy the two healthy girls you have now."
"How long I am suppose to take the hormone blocker?" I asked.
"For 5 years." Was my answer.

"What are the side effects of the hormone blocker?" This questions came from my husband who up until this point had not uttered a sound.
"Full beard growth." I said half-hearted laughing.
"No," said Dr. A, "You might have menopausal symptoms and it might stop your period all together."
"Oh." My husband said, that was the last thing he said in her office.
"Great," I thought, "No more babies, a deformed boob, and menopause at 35. Does this GET any better?" I am hoping you can read these words dripping in sarcasm.

"How long will I need off of work?" I asked. I know that this is stupid, but because of the new year I had NO time available and I am in the minus at work because of our Disney vacation.
"I do surgeries on Tuesday and Wednesday. You will be able to go back to work on Monday of the next week."
"Really?" I asked dumbfounded.
"Yes, with a lumpectomy the healing time is much shorter. With a Mastectomy, the healing time is much longer, you don't need radiation, but then you have the reconstruction as well."

"What is the difference between a lumpectomy and a mastectomy?" I wanted to open back up my option (shouldn't I at least get a pair of new perky titties out of this?)
"There is no difference in the survivor rate. If we do a lumpectomy you will have a 5-7% chance of the cancer recurring, if you get a mastectomy, it is the same. The only difference at this time would be healing time, reconstruction and with a mastectomy there is no radiation."
"What are the side effects of the radiation?"
"You will have what feels like sunburn just at the location, and you might feel fatigued. We should do the lumpectomy, and then IF the cancer returns in 5 years or so, then we can look into a mastectomy."

"Any more questions?"
I believe my Mother-in-Law asked a few, but I was tuned out... So much information was thrown at me at one time, sure I got a cute little brochure with explanations, I saw pictures of other women's breast in the radiation machine, and after shots of the scars, but this was so much, so fast. I wanted to just cry... I think it really hit me, all jokes a side. I have cancer. Then came the kicker...

"Okay, I know that it has taken you forever to get in here and I know that you want to get this thing taken out. I do my surgeries on Tuesdays and Wednesdays, lets see if I'm free next week."
"HUH?" I thought it, but I don't think any words came out....
"Next week?"
"Yes, follow me and we will have Anne set it up for us."
I followed my family numbly into the other room and sat in front of Anne's desk. She flipped through a scheduling book, and scheduled my surgery....

Wednesday, January 28, 2009
I need to arrive at 9:30am.
The isotopes and wire will be inserted at 10:30am.
Surgery starts at 12:20pm.

I got a pretty little binder and was sent on my way. If I have any questions to call Anne...

I spent the rest of the day in a haze. I had to go to a clinic for my Pre-op physical. There was no way that my primary doctor could fit me in by Monday at noon (that was only 3 days). Oh my gosh!! 3 DAYS!!! Then I went by my midwife's office and had my yearly visit and we got to sit and go through my binder, my pamphlets and she helped me get it straight in my head. During my breast exam (third of the day), she explained to me what my breast would probably look like (deformed) and reassured me that my family loves me for me and not the shape of my breasts. She also explained that when this is all over, I could always get reconstruction done. Then she removed my Mirena (note to those who have it, it is so much easier to take it out, than put it in). Finally my Dr. appointments were over and I could go back to work and finish my work day (that ended up being only 2hrs long) and figured out how I was going to make up my time while I was off.

You've just been diagnosed with breast cancer, what are you going to do now???

I'm going to Disney World!!!

January 17 - 21, 2009

And that is exactly what I did!!!
Actually this trip was planned since October (way before the Alien, Bob or the Phantom reared their ugly heads). My whole family (my husband, my 13 yr old, my 3 year old, my 13 month old and me) boarded a plane on Saturday for Orlando, Florida. This was our "big" gift to the family at Christmas. It was probably a good thing that we went since I had not found any results from my MRI guided biopsy before we left.

On Monday evening, I came home for Disney World and had two messages on my phone. One from Dr. O (the Radiologist that did the biopsy) and one from Anne (from the surgeons office). Anne told me that they have all the results and had scheduled me for Thursday 8:45am (and when I called her the next day to confirm my appointment I made sure that this was not a "tentative appointment" that it was in pen) and Dr. O told me that my results showed that neither of the two biopsies came back cancerous. But I did have Lobular Neoplasia and Fibrocystic Changes. She had talked to Anne and she said that Dr. A (my surgeon) normally takes this out with a little more tissue to ensure that it wasn't cancer. My husband was relieved, parents on both our sides were relieved.... Why wasn't I relieved?

I was pissed...

Why was everyone so friggin' happy that my right breast was not cancerous? I am still going to get cut into! I am still going to have to get Chemo and/or radiation! I STILL HAVE BREAST CANCER!! My husband asked me how I was doing? How am I doing?? I am angry. I am angry that now if I chose to have a mastectomy done, I am going to have to only have one side done, and I'll be lopsided. I am angry cause I don't know what the hell "Lobular Neoplasia" is. Is it pre-cancerous? I am angry that in my mind this diminishes the fact that I still have breast cancer. I know that this doesn't sound rational, I know that I should be happy about this, I was thinking to myself, "What is wrong with me? Why aren't I happy about this? This is a good thing." But it doesn't make me feel any better. I had my head and heart ready for bilateral breast cancer, I knew that the phantom had to be breast cancer too. I really don't know how I feel about it.

On Tuesday (after another really nice day at Disney World) my midwife called me and she said that Lobular Neoplasia is used as a marker for cancer. That those who have Lobular Neoplasia are usually watched more closely because you are more prone to getting cancer. Well they don't have to watch me THAT closely, I already have cancer. She also told me that the fibrocystic changes is just a cyst and is normal. Well that part is good. I also found out that the anterior (closest to my chest) mass is the Lobular Neoplasia and the posterior one (closest to the nipple) is the cyst. Good to know.

Even through all this we really ended up having a good time. We had a great room (thank you Marriott) and the girls had a blast!! We returned home on Wednesday and I had to get ready for my appointment with the surgeon on Thursday.

Friday, January 16, 2009

You have GOT to be kidding me!!!

January 16, 2009

I was SHOULD be getting ready for my 11:45 appointment with the surgeon. I SHOULD be calling my Mother-in-Law to make sure she has directions. I SHOULD be checking with my husband to make sure that he was leaving work to pick me up... I SHOULD be doing all these things, but instead I'm stuck at work with no appointment.

I called yesterday morning to confirm my Friday appointment. I knew that my appointment was a tentative appointment. Anne explained to me on Tuesday that IF the results were received on Friday by 11:45 am, I would get to keep my appointment with the surgeon. Anne even called the Radiologist and changed the lab the specimens were being sent to so we could get the results sooner. So I wanted to call and confirm this appointment so they wouldn't give it to someone else. When I called, I got the front desk. They didn't have an appointment for me at all on Friday. What? I explained that I had a tentative appointment and she was quite snotty when she told me that my results were still pending and when they received my results Anne would call me for an appointment. What? I asked to speak to Anne. She was off until Monday.

Side note: My family and I are going to Florida to Disney World from Saturday through Wednesday and I wouldn't be here when Anne called.

I got very upset, I ended up speaking to her supervisor and then to the office manager. The office manager acknowledged the fact that I did have a tentative appointment pending the results of my biopsy. She told me, "Mrs. N___, we haven't received the results yet. So Dr. A gave your appointment away to someone WITH cancer."

I'm sorry? What did she just say? Someone WITH cancer? Then what the HELL do I have???
At this point I am crying and trying to explain that I have been put off and cancelled for the past three weeks. Someone should have had the decency to call me and let me know that my appointment was given away. And instead of apologizing to me, she told me that I didn't actually HAVE an appointment scheduled, it was "tentative". Even if Dr. A received my results on Friday, she would have to review them to make a plan for my therapy before she would see me.

"Mrs. N___, once we get your results, Anne will notify you and make your appointment."

That was it, that was all I got.
No "I'm sorry, for giving your appointment away."
No "I'm sorry for not letting you know after the fact."
No "I'm sorry for the miscommunication."
Nothing...

So I had to spend the rest of my day calling my Husband, Mother-in-law, and Midwife and explain to them that I lost my appointment to someone who HAS cancer....

I once again see how people might give up before the fight ever really begins.... This is ridiculous!

I am going to forget about all this for a few days. I am going to go with my family to Florida and enjoy Disney World! I am going to bask in the love and excitement of my family... Who knows, I might even flash Mickey Mouse or Donald, could be the first and last time these ta-tas see Disney World! hahaha.

Oh, and god help Anne when she calls me on Monday morning to schedule my "REAL?" appointment!

Wednesday, January 14, 2009

The MRI Biopsy

January 14, 2009

Wow, just when you think that it can't get any worse, just when you think the hard part is behind you... You get a MRI biopsy. AARRGHHHH!!!!

I met my husband at 10:30am and dropped off my car in an overnight parking lot (I was going to take the Valium and didn't know how I would react to it and we didn't want me driving). We got the Radiologist's office at 11:15 and filled out another set of paper work. I wasn't feeling any effects from the Valium I took a half hour before, so I took one more. When they called my name, I kissed my hubby, then took my purse and Jordan into the back.

I knew the drill. I took off my jewelry, took off my bra and shirt, put on the gown, I got to leave my pants on cause I wore a pair of pants with no metal zippers or grommets (also known as "sweats"), and locked my purse in the locker. Unfortunately, we were not sure if Jordan's had any metal in him (probably does) so he had to go into the locker as well. I went to the bathroom and then found my chair to get my IV. A very nice nurse/tech came in and gave me a briefing of what was going to happen today. She brought another nurse in named, Briana to give me my IV. I showed her my bruise from the week before and told her that Rianna told me (the tech from last week) that the veins in my arms were superficial and to go for the wrist. She obliged me. When she stuck the IV, I swear she must have hit a bone or gone right through my wrist joint. OH MY GOD IT BURNED!!! I started to cry and had to bring my feet up into stomach in the chair. She kept apologizing and took it out. Then she tried the vein in my arm and found it fine. She kept apologizing the whole time (little did I know that I would here "I'm sorry" for the whole day).

Briana took me to the MRI room and they explained the procedure again, she explained that they were not going to be able to give me the headphones to wear this time and inserted foam earplugs in my ears. I asked if the procedure and needle would be the same as the one used during my ultrasound biopsy. She said close, that they were going to vacuum to get the specimens out and there wouldn't be such a loud clicking sound. Cool, I thought. Then she told me to please lie on the board face down. When I looked into the holes that my breast were to go into, on the right side there was a plastic clamp. This looked like a clamp that you would find on a hardware bench! I put my right breast in there and they started to clamp it up, hard. I thought that if they tightened anymore, I was sure that I wouldn't be able to feel the pain of the needles cause I was in so much pain already (unfortunately, I was wrong). After tightening the clamp (they refer to them as "paddles"), I was pushed into the MRI machine. They did a few sequences and then injected the Gadolinium (contrast). They did a few more sequences. The Radiologist told me there were two reasons for this; first, it was to ensure the lesions were still there and it wasn't just a fluke or hormonal tissue that went away, and second, to graph exactly where they needed to put the needle so they could get the sample. After the sequences, I was pulled out of the MRI machine. When the Radiologist came back in, I asked if it had went away and I can go home... No such luck. We were going to have to do two biopsies to get both ends of the linear line of lesions.

She stuck a vitamin E capsule on the outside of the outer "paddle". I was told the paddle had a graph on it, so it could pinpoint the exact location of the mass (lesion/nass - I will use these words interchangeably). They pushed me back in the MRI machine. Now, while this is all going on, I was not allowed to do anything other than breathe. If I was to move the slightest inch, it would throw off the measurements and the needle would be placed in the wrong location (no pressure now). After the doctor was satisfied where the capsule was, I was pulled out of the MRI and the procedure began.

I had my arms up over my head and they were freezing, I had my head turned to the left, laying on my right ear. I couldn't hear anything from the other side, and this was where the Radiologist was. I kept asking the nurses what was going on. I was told that I would feel a pinch... "AAAAAAAA!!!" I called out, it burned. I don't think she did any skin numbing first like the other radiologist. She didn't stop, she kept saying,"You're doing good Laurie, almost done, almost done." I started crying, my breathing became erratic. The Tech and Briana came to my left side and started rubbing me. Someone was rubbing my back and someone was rubbing my butt.

"You will be okay."
"You are doing so good."
These two phrases became their mantras.

I was clutching the bed and my upper body was shaking. Finally the "pinching" and the burning subsided and I let go of the bed. I felt pressure of something jolting into my breast. My god! "What was that?" I called out. "It's okay," the Dr. told me, "it's the needle. It's almost there." That was A LOT of pressure, not so much pain. Then with the needle (which turned out being a 9 gauge 8 inch long needle, with a big round plastic holder, also about 8 inches long as well)hanging out of my breast, I was pushed into the MRI machine so that the Radiologist could see if she placed the needle in the right place. So I laid in there another few minutes. I was pulled out of the MRi machine and she said it was perfect (thank god!!) and then I heard this drilling sound.
"What is that?" I asked.
"Oh didn't we tell you that we were dentists on the side? It is the vacuum."
That is exactly what it sounded like. The drill at a dentist office.

After about 6-7 drills, they inserted the titanium clip and rolled me back in the MRI machine to start the other biopsy. When I came out, the Radiologist started to do the anacain again. This biopsy had to be very close the the chest, cause I started screaming when she started inserting the needle for the lanacain. "Oh Jesus." I cried and started shaking. "I'm putting in more lanacain, Laurie" The Dr. told me. It wasn't helping, my body was completely rigid, my upper body was shaking uncontrollably. The two women were once again rubbing on me. I kept thinking, when was the Valium suppose to kick in and put me out? Before I had a chance to calm down from the needles (or as far as I was concerned get numb enough) WHAM!!!! The big needle went in. I screamed!!!
"I'm so sorry!"
"It's almost done!"
"You are doing so good!"
I was pushed back into the MRI machine, once again with a HUGE needle hanging out of my breast for confirmation and it was in the right spot. Thank god it was. This time though, I could feel the pressure of the vacuum tear each piece out of my breast. Thank god it didn't hurt at that point, just pressure.
"You are doing so good." Briana said again.
"If I'm doing good," I said through sniffles,"I would hate to see your crappy patients."
"You would be surprised." She told me.
After the vacuuming was done, I was sent back through the MRI one more time to make sure that they got the right specimens. They had.

When I was rolled out of the MRI machine, the first nurse unclamped my breast and began pushing against my breast really hard. It hurt more than the clamp! She explained that she needed to put pressure against the opening to stop the bleeding. My Lord, how much blood could there be, that you are insisting to beat up my breast? After about 15 minutes, they let me sit up and I was finally able to take my face off the snotty pillow. But my breast stuck to the paddle on the inside and it caused me to start bleeding again when I pulled it out. So another 5 minutes until I was able to get off the table.

When I looked at the table, there was blood all over the clamp, and then I looked at the ground. There was bright read blood everywhere! On the bed, all over the ground.
"I guess it is good that no one fained this time." I said, halfway to myself.
"What?" Briana asked me.
"My Midwife came with me to my ultrasound and Dr. H made her lay down cause she just about passed out."
"Oh my gosh, I heard about that!! That is hilarious! That was you! They didn't tell me who it was just a midwife had to lay down on the floor during a biopsy, and Dr. H won't allow anymore Midwives in the room." Briana was cracking up.
"Yup, that was me." It was nice to know that my midwife and I were infamous.

I was brought back to the IV chair and Briana took out my IV. Then got me some crackers and cranberry juice to help stop my shaking. The strong nurse was still pressing on my breast this time trying to make it bleed so there wouldn't be any bruising?? That still doesn't make sense to me. But after the bleeding stopped, I had to have another mammogram done to ensure the clips were where they needed to me. So I walked to the mammogram room and once again thought, thank goodness I was still so numb and couldn't feel the squeeze.

After that was over, the nurses wanted to bandage my breast and I told them that I was allergic and they would have to use the beige tape. Jthat tape didn't seem to bother me as much. They said that they would Derma-bond it. No, I said the beige tape is fine. "No," Briana told me, "you know how you asked if the needle was bigger and I said it was about the same? Well I didn't want to tell you how big it was and scare you." This is when I found out that the needle was a 9 gauge needle and I asked to see it. It had a tip on it like an arrow. So they didn't slice my skin like my other biopsy, they just shoved it through. So I need the Derma-bond cause the puncture holes were too big for the beige tape. Briana put on two layers, gave me some (a lot) of ice-packs. I got dressed and once again asked if the results would make it to Dr. A (the surgeon) before Friday (this was very important if I was going to keep my appointment). I left and met my husband in the waiting room. I told them that they were all very nice, and please don't misunderstand this but I NEVER WANTED TO SEE ANY OF THEM AGAIN!!

Monday, January 12, 2009

My MRI Report

Since I had it, I wanted to share my MRI report with all of you and see if I can decipher as much as I could. My comments with be in the brackets in light pink.

01/07/2009: BREAST MRI WOW BILATERAL (I don’t know what the WOW means; I am hoping that they were that my breasts were that amazing)

Clinical History: New diagnosis of moderately differentiated invasive ductal carcinoma (Please see previous blog with Dr. W, where he tells me that “moderate” differential is better than “poorly differential).

Comparison is made with the prior studies, most recently dated December 2008.

Technique: Bilateral breast MRI was performed in a dedicated breast coil (this is where I laid face down on a board and put my breast through two holes in the board, I don’t remember any coils), with images acquired in the axial plane. Both short and long TR puls sequences were acquired. Dynamic imaging was performed following gadolinium administration (this was the contrast through the IV). Sagital reconstructed images were reviewed. All images were obtained on a high field, 1.5 Tesla imaging system.

MRI of the breasts demonstrates a moderate volume of fibroglandular tissue bilaterally. There is a 2 cm speculated mass the 8:00 position of the left breast (this is the Alien), corresponding to the newly diagnosed invasive ductal carcinoma. Anterior and lateral to this lesion, there is a second 8-9 mm lesion, consistent with the satellite lesion also recently biopsied (this is Bob). These lesions are approximately 7mm apart. No additional areas of suspicious enhancement are seen within the left breast (Yeah!!). No definite areas of lymph node enlargement are noted (this is good; it means that it hopefully hasn’t spread beyond my breast). There is no abnormal enhancement of the chest wall (also good news).

Within the right breast at 10:00, a linear strand of enhancing avidly enhancing masses is seen (this will now be referred to as the Phantom), extending over a length of approximately 7 cm. The largest lesion is within the posterior third of the right breast, 10cm deep the right nipple, and measures up to 1cm in size. The most anterior lesion measures 7mm, and is approximately 2.5 cm deep to the right nipple. There is no corresponding abnormality of ht mammogram. The enhancement characteristics and distribution are worrisome for additional sites of neoplasm (cancer). I would recommend MRI guided biopsy of the most anterior and posterior (the tails) of these lesions. No enlarged right axillary lymph nodes are noted (yeah!).

Impression:
1) There is a 2 cm speculated mass the 8:00 position of the left breast (once again, this is the Alien), corresponding to the newly diagnosed invasive ductal carcinoma. No additional sites suspicious for malignancy are seen within the left breast.
2) A linear strand of enhancing masses is seen within the 10:00 position (the Phantom) of the right breast, worrisome for contralateral neoplasm. As per the above, I would recommend MRI guided biopsy of the most anterior and posterior of these lesions.

Saturday, January 10, 2009

Just a Word

Jan 9, 2009

Today was suppose to be my appointment with the surgeon. I figured that today I would have my answers, today would be the day we could finally breathe, today would be the day that I could sit down with my children (at least the older ones) and explain what I have and how we are going to fix it....

Instead, I was fighting traffic at 8am trying to get to an ultrasound to see if it would save me from a more horrible test. My appointment was actually at 9am, but I wanted to get there early since they were trying to fit me in. I got there at about 8:55 (so much for being early). The front desk clerk asked me for my physicians order and I told them that my Midwife faxed it the day before. They didn't have it, but she knew that calls were made late last night to get me in early this morning. So they called my Midwife's office and have them fax it again.

"I remember you,"she said, "you were here on Christmas Eve with your Midwife and best friend."
"Yup, that was me."
"No entourage today?"
"Nope," I said, "just an ultrasound today, no need for the back-ups."
"Well, have a seat, Mr.s N___ and you will be called soon."
"Thank you."

About 15 minutes later (if that) the tech who saw me at both my mammogram and my biopsy opened the door and called for me.
"Hi," I said like greeting a friend, then felt awkward realizing that maybe she didn't remember me," I was here a couple times and always get you."
"Yes, I remember. I expected you to have your Midwife with you."
"Oh no, she knows her limits now."
"No more floor time for her, huh?"
I laughed,"Nope."
She brought me to the changing room.
"I know the drill," I said," everything off the top, gown opens in the front."
"You got it." She smiled.

She brought me into the ultrasound room and talked with me for a little bit and we both looked through my mammograms to see if we could see anything on the scan of my right breast. Not a thing.

The radiologist came in (a different one) and he got ready with the ultrasound wand. We started and he looked everywhere. At first he saw a circular mass (it looked as nonthreatening as Bob had originally) and said that that might be some of what they were talking about, but he couldn't be for sure. Then continued around the 10:00 position on my right breast and found..... nothing. Not a dang thing.

"I'm going to have to have the MRI biopsy huh?" I asked.
"I'm afraid so." He said and generally sounded sorry, "They need to find out all they can on this because it would completely change the therapy."
"How would it completely change it." I asked.
"Well, if it is cancer and still contained, "in-situ" they would need to take it out. And then you are not looking at one breast with cancer, there is two. That changes the therapy and your chances of it reoccurring."
"Oh."

He left me to get dressed. I wiped off the ultrasound goop, got dressed, left and on my way to my car I called my husband. "They couldn't see anything, I am going to have to have the MRI biopsy done."
"I'll bring you and be there for you. You need to call for drugs."
"Thanks, I will. I love you." Then I hung up the phone.

I had a few calls to make. I called my Midwife to let her know my news and request drugs. I called my 13 year olds orthodontist, she had her first consultation for braces on January 14th, and we needed to reschedule that, and I needed to call Anne, the surgeon's P.A. and let her know that we are on for the MRI on the 14th.

I was mentally ready for the MRI biopsy now. I just wanted to make sure that we try every opportunity that I had before we do it. But we have to do it, so we will do it. But my day was pretty much blah at work. I didn't want to be there, I felt antsy, my head hurt. I just felt like every time we thought we might catch a break, the rug gets pulled out from under us again. Already I can understand why people just say, "Screw it!" and give up. Of course I can't do that, but I can see why they do and I haven't even seen the surgeon yet! Maybe I am suppose to go through these test so I can do this and tell everyone what it is like as real as I could.

I got home and there was another package from my Bountiful Babies Mommies. I opened it and it was a pretty pink scrapbook and on every page was a picture of one of my Mommies with their little ones, donning pink clothes and holding a sign in support of me. "We love LJ" "We support LJ" with "Cancer sucks!!" underneath it, or one mommy coloring and styling her son's hair into a pink mo-hawk!! With every page there were quotes on cancer, fighting it, and supporting it. I cried as my husband sat next to me looking through the pages. Through my tears I told him who everyone was and shared some of their stories. He sat dumbfounded. All he could say was, "Wow, where did they find to do all this?"

There was one quote, I don't know why it hit me so hard, but it was...

Cancer is a word, not a sentence. - John Diamond

He is right, it isn't a sentence, it is just a word... A plain Jane word. I will not longer treat it like it is a sentence. I will NOT capitalise it in these blogs anymore, cause it is not worthy of capitalization. I will beat this and it will understand that in my whole life of adventures, loves and laughter it is just one little word.

Friday, January 9, 2009

The Good News and the Bad

Jan 8, 2009
Well, my appointment at my surgeon’s was cancelled…

I received a call from my Midwife at about 1:30 in the afternoon on my voice mail and it told me that she needed to talk to me about my appointment at the surgeon’s, there were some changes. I called her pager and she returned my call.
“Hello Laurie Jo?”
“Hey, what’s up?” I thought two things. It had spread so far that the surgeon couldn't do anything, hence the appointment was off, or maybe she was calling me to tell me that after the MRI they had realized that the cancer was gone, hence the appointment was off.
“Well Anne (the surgeon’s Physician Assistant) got your report and they found something on your right breast. They need to get it biopsied as well, before you meet with the surgeon.”
“What?” This is where my eyes glassed over with tears…
“They need to do a MRI biopsy to find out what is in the right breast.”
“A MRI biopsy? You mean that they are going to go digging in me while I am still IN the tube?” This is where my hyperventilation kicked in.
“I’m sorry Laurie Jo. Ann will call you either today or tomorrow and tell you when your appointment is at the radiologist and then she can schedule you for a new appointment. I swear one time I will call you with good news.”
We hung up from each other and I called my husband bawling…

“I can’t go through that. In the tube with the needles?”

Side note: My sister always complains that I try to trump her in everything she does. She thinks it is my subconscious competitive side. She had a 9.6 lb baby, I had a 10 pounder. She has MS, I have cancer. She has to spend 3 hours in the MRI machine getting her scans done every year…. I have to be there for 3 hours with needles?? This is one thing I didn’t want to trump her on.
“I’m sorry sweetie,” My husband said, “When is it?”
“I don’t know yet, Anne is going to call me and let me know.”
“I’ll be there for you. I love you.”
“I love you too.”

I went back to work in tears. Malinda saw me at the front desk, asked me what was going on and after I told her, she ushered me to Donna's (our directors) office and we were looking up a MRI biopsy on the Internet.
“You have got to be shitting me.” Was all she could say…
Apparently, they put you in the MRI and while you are in there laying on your stomach with you breast hanging through holes, they press these plates against them and you are in the machine as the radiologist performs the biopsy (as stated in my previous blog).
“I’m gonna need some drugs.” I said crying.

I called Anne and she had told me that she had the report and it said that there was a linear line of masses about 10cm long (that sounds big) and before I see the surgeon I will need to have a MRI biopsy. That way when I see the surgeon, she has all the information she needs to assign a treatment plan.
“But why a MRI biopsy?” I asked.
“Because they couldn’t see it with the ultrasound.”
“Whoa,” I said, “they never checked my right breast with an ultrasound.”
“They didn’t?” Anne asked, I could hear her ruffling through my chart.
“No. they just did the left breast.”
“Oh, I see, they didn’t see anything in the mammogram on your first one, so they didn’t see a reason to do an ultrasound on the right.”
“That is fine, but can’t they try to see if they can see it with an ultrasound before they go for the MRI biopsy? I don’t want to do that if I don’t have too.” I said getting shaky again.
“Maybe they can check it when you go in for your biopsy on the 14th.” She said, let me call one of my contacts over there and see what I can do.
“Thank you.” I said and hung up.

Both Donna and Malinda were fired up, “Why do they need this biopsy, they know it is cancer, take the frickin’ things and be done with it. Why go through all of this?!”

I was not going to wait until the 14th to find out whether or not they are doing a MRI biopsy, I called my Midwife.
“I want to get an ultrasound done on my right breast. It is ludicrous to have a more invasive procedure done when nobody has checked the simpler version!”
“I will call right now and see if I can get you in. They probably cannot do the biopsy then, but at least we will find out if we can see it or not.”
“Oh,” I asked, “ can you please send me a copy of my report. You can fax it to my work.”

I received the fax within minutes and called the radiologist I worked for, Dr. W. To be honest, most times I have to deal with him he can be an ass, but Donna convinced me that he would help me out. So I gave him a call.

I read him my report and we went over it paragraph by paragraph.
“Oh, this is good.” He said.
“Really? What part? I will take anything.” I said.
“You have moderate differential invasive ductal carcinoma.”
“How is that good?”
“All normal cells have the capability to be cancer. A well differentiated cell looks normal, and a poorly differentiated cell means sever cancer. Your cells are moderately, so figure maybe 1/3 bad, but 2/3 good. That is good.”
"Okay." I said, not fully convinced, cancer is cancer right?
"On your right breast, the radiologist doesn't use aggressive words." He told me.
"Dr. W you have lost me."
"Okay, let's look at the first paragraph again. See the word spiculated? That is a very aggressive word, it is highly suspicious for cancer. In the right breast paragraph, he doesn't use these types of words. That is good. It is worrisome mostly because your left breast has cancer. This doesn't necessarily mean that your right breast does. Especially with breast MRIs, the images are very sensitive and gives a lot of false positives, that is why I hate doing them (this is true, he doesn't do them at any of our facilities so I had to go to another radiology group). But all and all, it is not all bad.From the sounds of it, you have stage 2 cancer."

And there it was... Nobody had told me that. Granted this isn't coming from my surgeon, so maybe it will be different, but someone finally gave me an incling of what stage it is.. Stage 2, well it is worse than stage 1, but better than stage 3 or 4, right?

When Dr. W noticed my silence he asked, "They told you this right Laurie?"
"Dr. W, nobody has told me anything."
"Well, from what you read, it probably is stage 2. I am so sorry that you are having to go through this. You aren't very old are you?"
"No sir, I'm 35."
"Any breast cancer in your family?"
"No sir."
You could hear him "humph" with his breath, "I'm so sorry Laurie Jo, if there is anything I can do to help you. If you get any reports and you just want me to go through the gobbly-gook with you I will. Just let me know."
"There is one thing." I said.
"What"
"It recommends a MRI biopsy, but I never had an ultrasound on that breast. Do you think it is out of line for me to request a ultrasound on it first to see if they can see it?"
"Absolutley NOT out of line. An ultrasound biopsy is so much easier than a MRI biopsy. You fight for that."
"Thank you Dr. W."
"Bye Laurie Jo. I mean it anytime."
"Thank you so much Dr. W."

I hung up the phone as my Midwife was calling me.
"Hey Laurie Jo, I got you an appointment for just an ultrasound for 9am tomorrow. Even if they see it, they cannot do the biopsy at that time, but we can change you appointment on the 14th, from a MRI biopsy to a ultrasound biopsy."
"Thank you so much!" I said.
"But Laurie Jo," she interrupted, "If they can't see it, you do need to get the MRI biopsy done."
"I know, but mentally I will definitely be more mentally ready for it. Plus, I want drugs."
"Not a problem" she told me.

So now I wait until tomorrow morning to find out whether or not I have to be in the tube for my biopsy.

Please see it on the ultrasound....

Wednesday, January 7, 2009

Jordan Knight

January 7, 2009

I had my MRI today. It was pretty uneventful after the biopsy, but what happened once I get home was "Post-worthy" so here we go.

I left work at about 12:30pm to make the 30 minute drive to get my Bilateral Breast MRI done. When I finally found the office (after driving around an additional 10 minutes trying to find the friggin' building) I went in and started filling out my plethora of paperwork. I got to a "Consent for Gadolinium" sheet and stopped.

"Excuse me," I asked the front desk clerk, "Am I having contrast today?"
"Yes"
"Well it would have been nice if someone would have mentioned that." I said in the nicest peeved voice I had. Okay now the nervousness sits in. I don't want an IV, I don't want to do this... But I had to do this so I could get well. But did I really???
"Mrs. N____?"
"Yes, that's me."
"Follow me please"

I followed the radiology tech into the back and she gave me my instructions:
"You can change in here, please take off your shirt and bra and any other clothes that have metal on them. You can wear this gown, and if you need socks here they are. Then please remove all your jewelry, and you can put it with your purse in this locker. There is a lock and the key that you can keep with you. Please go to the bathroom cause you will be on my table for about 30 minutes and then you can meet me in exam room 1."
"Okay" I said and went through the whole list in my head as I did it. You really don't realize how much jewelry you wear until you are instructed to take it off...
5 earrings
4 rings
1 naval ring
1 crucifix
1 watch
and dang it I forgot to take off my glasses!
After putting all my jewelry in my purse and then sporting the gorgeous blah grey gown and after pottying (of course) I walked to exam room 1 which had a chair to sit on and I thought, how are they going to give me my MRI while I was sitting on a chair? Then it hit me, dang it this is where they do the IV. I started to back up as the tech came behind me to usher me in the room and in the chair. She tested my veins on my right arm, then my left, tried a vein on my left, and after she put in the needle she decided that it the vein was too superficial and pulled it out. "You have GOT to be kidding me!" I thought. Then she tried my right arm again, and decided on my right wrist.

After sitting there for a few minutes, the tech lead me into the MRI room and I had to open my gown and lay face down on a board that had two holes in it for my breasts. Once on the board, the tech walked around to each side of my and positioned my breast through the holes... I once again wondered if I will have any modesty once this whole cancer thing is over.

She explained to me that they will do a few scans without contrast, then will proceed to inject the contrast (automatically with an auto-injector) and then do the rest of the scans. She told me that the machine is extremely loud and they give me headphones to wear to make it more comfortable. I could hear her through the headphones and she would explain what the machine was doing and she could hear me as well. I chose a soft rock station, laid on my stomach and turned my head to the left. She started to push me through the magnet (the large, thick tube).

My mom and my sister told me that I should close my eyes while in the tube. I am not normally claustrophobic and I have gone to tanning beds and pulled the bed as closed shut as I could possibly get it, but as they were pushing me into the tube, I decided to take the advice of others and shut my eyes.

The magnet started and it was loud, REALLY LOUD! I could hardly hear the music that was trying to comfort me. As the magnet started clunking, I swear I could feel the arteries in my neck throb a little harder and pull down. I also could feel a vibration in my legs. I don't know if that was from the MRI magnet or the sound of the clunking, but it was making it hard to concentrate on "Journey" singing t me through in my headphones. I laid there for a few minutes and the tech came through the speakers, "Okay we are ready for the contrast." Then I felt a coolness run up my arm. You know how before you get a shot, give blood, get an IV they rub your skin with an alcohol pad and it feels really cool? That is the way if felt but on the inside of my arm, not too uncomfortable. The tech told me that they would be starting the rest of the sequences that I would need to be very still. That is when my forehead itched, I felt like my nose was getting stuffy and I was afraid that I couldn't breath. I took a deep breath in and almost opened my eyes. "Keep them closed" I yelled at myself in my head...

I thought that my sister (who has MS) goes through this every 6 months to a year. She has 4 done, a brain, cervical spine, thoracic spine, and lumbar spine. I don't know how she could stay in this tunnel for hours on end doing this. Well if she could do this, than I can do 30 minutes to save my ta-tas!! Just as Daniel Powter's "Bad Day" started to play, I thought how appropriate... Then it was done. The tech came in and unhooked my IV and said she was going to pull me out of the tube. That was when I opened my eyes...

Oh my God, I am glad I kept my eyes closed!! The tube was so close that I could not have hunched my back with out touching the top. My arms were touching the sides. I felt like I couldn't breath, then miraculously I was pulled out.

I got dressed and left with my previous mammogram films (by the request of my surgeon) and confirmed that my doctor would get the results by the time of my appointment of Friday.

Compared to my biopsy, pretty uneventful... Nobody almost passed out, no needles and no burning. Yeah!!!

When I got home that night, I had a package in the mail. Which was odd cause I had not ordered anything online in quite sometime (I very proud of myself for that). I saw that the return address was Texas and knew it was from on of my BabyCenter Mommies.

Side note: When I became pregnant with my 12 month old, I went online to BabyCenter.com to sign up for weekly emails to tell me how far along in my pregnancy I was. I noticed that they had a "Baby Board" full of women that were due the same week I was... SWEET!! So a group of about 30 of us went through pregnancy, birth and postpardum together. We had dwindled down to about 18, but we are all very close, communicate everyday online and a few of us have met a few times. It is a really great support group of women all over the US (and a few in Canada) that I feel really close too. Anyway....

I opened the package and it was a gift wrapped in iridescent paper that had pink breast cancer ribbons on it. I teared up reading the card.

"Just a little something to comfort you during your appointments and procedures! All our love, Your Bountiful Friends"

These women were so great. I just knew it was something special that I could hold in my hand during biopsies, surgeries, radiation and/or chemo. Maybe a pink scarf, or a pink shirt, I was sure it was something pink and breast cancer related.

Then I opened the wrapping and busted out laughing! I hadn't laughed this hard in a long, long time. I got... an authentic JORDAN KNIGHT doll!!!! Oh my God I laughed and laughed and laughed, it even had his rat-tail braid!!

To truly understand this, you need to know that I am a HUGE New Kids on the Block fan. I have been since I was 13 years old. I have loved Jordan Nathaniel Marcel Knight for over 20 years. I had the names of our children planned out. When NKOTB made their comeback I was at their concert, yes I was laughed at, but as all good New Kids fans know, we don't care what they say, we will "Hang Tough!!" It was the absolute BEST gift I could have possibly gotten, and best laugh I have had forever. Of course my husband didn't see the humor as much as me.

So, if you see me in the chemo / radiation chair, you will know me because I am the one holding Jordan Knight.


Tuesday, January 6, 2009

God is helping make it easier...

Disclaimer: This post gets a bit teary. I debated whether or not I should put the more emotional parts in this, but if you want to ride this rollercoaster with me, you must be ready for the highs and the lows….

News years Eve… December 31, 2008
The day started talking to my sister all the way to work (I love Wednesdays, I am going to work and she is coming home from work so we can talk uninterrupted for a little over an hour). Of course we were talking about the cancer, I had only found out the day before.

She asked how I was doing, and other than a few tears when I found out, I was doing pretty good. I told her how Meg, another friend of mine, had said the night before, “Thank goodness you didn’t get that new job last month. It was God’s way of looking out for you.” Then we started talking about God.

“I don’t think I could go through a “Why me God?” thing” I told me sister, “I don’t blame him for me getting this. I don’t think I could.” My sister (who was diagnosed with Muscular Sclerosis 4 years ago) agreed that she really never went through an “Oh God why did you do this” thing. “Actually” my sister said, “maybe God is helping you through this whole thing, trying to make it easier on you the best way he can.” We spoke of the new job that I didn’t get, and how because of the horrible pain in my breast we found the Alien, and subsequently how we found Bob as well. Maybe God was working in mysterious ways and figured that nobody would have found it at my next well-woman appointment and he wanted us to find it (hopefully) early enough to fix it.

All day, I was thinking of ways that God was trying to help me through this… My three year old started Sunday school and I would go to church while she was in class. I prayed all the time, but there is always something relaxing and soothing for me to be in a church closer to Him.

I shared all this with my BBC (BabyCenter) friends and they all agreed and supported me. Come to think of it, God giving me this group of wonderful women that I have shared the pregnancy of my last child with and now my everyday life with. It is all to help me, support me and show his love for me.

That night, we celebrated with our girls (my step-daughter was with her mother), the baby went to bed at regular time and my 3 year old got to “stay up late” with the grown-ups and celebrate the New Year (not really, instead of her going to sleep at 7:30pm, we let her stay up until 8:30pm,) and we brought out the champagne (sparkling-cider) and the special New Year cookies (Little Debbie’s Apple Flips). At 7:59 and 50 seconds, we started the countdown from 10 (she doesn’t know any better), then we sang songs and then said good bye to 2008 and hello to 2009. Then she went to bed, not any the wiser, and happy.

My husband and I tried to stay up until midnight, but at 11:30, I was pooped. It had been an exhausting few days, hell an exhausting month! Chris left with the dog to give her last walk of the evening and I went upstairs to get ready for bed.

In my head I just kept thinking about how God was blessing me to make this as easy on me as possible. I was counting my blessings. I walked in my daughter’s room; I leaned over my three year old and gave her kiss as she was sucking her thumb. If there was ever a “Mini-Me”, she would be it. She was the spitting image of me. I smiled when I thought this cause I always wanted a little one that looked like me. Then kissed my hand and touched my baby’s forehead in her crib. Where my 3 year old LOOKED like me, my baby was me on the inside. Her temper, attitude, liveliness, her need for attention, it was if my soul was born into her (for better or worse). I loved my children; it was then that stopped and thought again, “God is trying to make the cancer as easy on me and my family as he can… But what if he gave my husband, in our children, my body (our 3 year old) and soul (our baby) so it would be easier for him, when I die….

I froze, and then started shaking as the tears started pouring out of my eyes and sobs heaved through my entire body.

I whispered, “God, please don’t take me from my children.”

I left their room and couldn’t control my crying. I went into my bedroom and bathroom to get ready for bed, but I couldn’t stop crying.

“God, please don’t take me from my children.”

When my husband found me, I had given up washing my face or brushing my teeth I was sitting on the bed hunched over bawling. He came up beside me on the bed and pulled me in his arms and I just kept crying and saying over and over….

“God, please don’t take me from my children.”

Chris was awesome as usual. He calmed me down enough to get my pajamas on, teeth brushed and my face washed. We were able to ring in the New Year in each others arms and with I love yous and promises of getting through this and being stronger for it.

And when I rolled over to my side of the bed to go to sleep, I closed my eyes and whispered…

“God, please don’t take me from my children.”

Saturday, January 3, 2009

The Awkward Silence....

Dec. 30, 2008

After my biopsies, I was told that I would hear my results on Monday, maybe by Friday because they were sent to Georgetown rather than the pathology lab in New York. Friday came and went with no word. After a LONG weekend, I check in with my midwife and she said that she called the Radiologist and because of the Christmas holiday everything was backed up, it didn’t look like I would get my results on that day either, but if the Radiologist called she would call me…. No one called.

Finally on Tuesday I got my call. It was from the Radiologist….
Me: Hello?
Dr: Mrs. N____?
Me: Yes.
Dr: This is Dr. So & So; I did your biopsies last Wednesday?
Me: Yes. (Like I wouldn’t remember someone who jabbed needles into my boob?)
Dr: We got the results back and both sites are Cancer.

And then there was the awkward silence…..

Me: Um… both sites?
Dr: Yes, both sites, even Bob.
Me: Even Bob huh? (still in shock)
Dr: Yes.
Me: So… will my Midwife call me?
Dr: Yes, I just spoke to her and she was not going to be able to call you for at least an hour and we both decided that I would call you. (Personally, I think that my midwife wanted the Radiologist to drop the bomb, so she could be compassionate when she called. I think that she is emotionally attached to me and invested in this (hence the passing out), I think she might have lost it if she had to tell me).
Me: (In a cheerful voice) well thank you very much, I appreciate it. (What else was I going to say?)
Dr: Good bye.
Me: Good bye.

I just sat at my desk. I had been joking to my family and my friends that the worst case scenario would be that the Alien is cancerous and I would get two new titties from this. But for both sites to be cancer? Not cancerous, not unknown, nope… Cancer.

I had to call my husband Chris. I told him exactly what the Dr. told me. “Both sites are cancer.” Then the awkward silence returns. “We will fight this and get through it.” he said to me. “I love you.” is what I said to him. What if I die, I thought. I want him to know I love him.

I had to call my Mom and Dad. Both of them knew of the biopsy. My mom was convinced it was probably a cyst and a clogged duct (just another thing that she had against breastfeeding). They were not at home and I had to call there cell. Can you imagine leaving THAT message on their machine? My Dad answered the phone, my dad NEVER answers the phone. “Hey Hon, what’s up?” “Dad, they called me, both sites are cancer.” Then there was that awkward silence again. “Hon, I’m sorry. But you’ll get through this, let me get your Mom.” I think that he handed off the phone cause he didn’t want me to hear him cry. “Dad,” I yelled into the phone so he could hear me before he handed me off, “I love you.”

Of course when you talk to your Mom, no matter how strong a person you are, you will cry. “What’s wrong?” I think she said this cause my dad was tearing up when he handed her the phone. “Both sites are cancer.” Then the awkward silence. “Oh Laurie, I’m so sorry.” She started crying right away, causing my tears to as well. I flashed back to every year in Junior High and High School when I would try out for the cheerleading and Pom-pom teams and didn’t make it. I was fine when the results were posted, I was fine walking to my class, I was fine until I would call my mom and had to tell her and I would just break down. Why do Moms do this to us? How do Moms do this to us? “Do you know anything else? What happens now?” My mom asked me. “I don’t know, my midwife will call me in a few and I will call you right after.” I was wiping my eyes and trying to hold it together, “Call us after you talk to her.” “Okay, Mom. I love you.” “I love you too Honey.”

I was at work and had locked myself in the owner’s office to make my calls. I walked out and Malinda, one of my colleagues asked me what I found out. “Both sites are cancer.” It became my mantra. Then there was the awkward silence. “Well shit!” Malinda said. You can always count on Malinda for the hitting the nail on the head, “I’m sorry.” “I’m fine.” I told her and went back to my desk.

I needed to call my sister, but she works the night shift over in California and I knew that she would be asleep and I didn’t want to wake her. So I sent her a text, “Stock up on the Pink. Both sites are cancer.” My sister called within minutes and leave it to her to break the awkward silence. "F#ck Bob! I mean we thought the Alien was cancer, but who the f#ck does Bob think he is!!??” I laughed. Yes you can always count on my sister to spin it in a new light and give me someone to blame… Bob.

I talked to her for a little bit and told her that she really should get checked, because now this put her in the “High Risk Group” for breast cancer now that I have it. “Damn it Laurie Jo,” she said, “I already have M.S, can’t I be normal?”

After finishing the call with my sister who contained a few more profanities, I sat at my desk to continue my work. I just started to cry... there was too much awkward silence.

Friday, January 2, 2009

My Biopsy

Dec. 24, 2008

I received a text from my best friend at 7:00 AM saying she was already at the dr. office. This was extremely surprising because my appt wasn’t until 7:30 AM, I was still on the road and my BFF is never on time for ANYTHING! A little background on my best friend (Dani): her Dad passed away in July from Gioblastoma (brain cancer) it was at a stage 4 when they found it, and it was in his hypothalamus so they could not operate. I wasn’t going to tell her about any of this until we knew something for sure, but I know that she would kick my ass if I didn’t tell her. She offered to come with me, and I at first said no, but my sister told me that since Chris (DH) couldn’t come with me, that it would be good to have her there with me, plus, this might mean a lot to her to be there for me and watch me fight it if it is in fact cancer. So I asked her to come with me, not thinking for a minute she would beat me to the Dr. Office!

I got there and she was sitting in a chair and she had signed me in. My Midwife (MW) came in about 5 minutes later (she also there for moral support). At about 7:45 I was called, and me and my entourage headed back. In the examination from, I was told that my entourage would not be able to stay. Both my BFF and my MW were fighting to stay. The radiologist came in and my MW won her bid to stay (saying it was not only for support, but for educational purposes) but my BFF was shown back to the waiting room to wait for the 1 ½ hours that the procedure would take.

I was told to disrobe from the waist up and put on a gown (opens in the front). I laid down on the bed and my MW held my hand. The radiologist first did the u/s and marked with a sharpie where she would make incision. There were two masses. The first one is the massive one that they are worried about. It looks like the Alien from the game Missile Command (this mass will be now known as AMC). Then came the skin anesthesia. The needle was about 2 inches and she made tiny pricks all along my breast. Then she took the anesthesia for the inside of the breast. This needle was scarier; it was 4 inches and had a lot more lanacain in it. Half way through I was still feeling a burning and she was surprised and asked if I needed more novacaine at the dentist, yes was my answer, so she gave me the full dose (Thank God). After she was done (the Radiologist) she held a scalpel and said that I have three choices when she pricked me, sharp, pressure or nothing. I felt nothing. She made a slit about ¼ inches in my breast got out the BIG NEEDLE.

Dear lord, this thing was a 8 inch long, 14 gauge needle that was spring loaded so once inside it would make the sound of a large stapler stapling (this was were the spring would snap and pull in the mass tissue). She tested the needle a few times so that I would be aware of the sound and wouldn’t jump when she did it. Then she with one hand on the u/s wand (to show where she needed to go) and one hand on the needle she shoved the needle into the slit and began the procedure of collecting the mass. At this point, my MW started to feel woozy. The tech told her that she had turned a shade of gray. The Dr. told her to lie down on the floor, which she did (she would pull on my gown to let me know that she was there with me). The Dr. found the spot she wanted and then came the countdown… 3…2…1… CLICK!! HOLY CRAP!!! The worst burning sensation traveled through my breast, around my chest to my back. I started crying and telling them that it was burning, my body started to shake. My MW pulled on the ground to tell me that I was doing okay and the tech beside me rubbed my arm. The radiologist pulled out the needle and emptied the needle into the Petri dish and I said that was it, we are done? “Oh no,” she said, “we have five more to do on this mass alone”. Oh my god and the tears started flowing more. Fortunately for me, she to wait a few more minutes trying to retract the needle again, that the anesthesia was kicking in more and the next needle didn’t feel as bad. By the third try, the dr. complained that there wasn’t enough power in this needle to suck the mass in. Words like “massive” and “large” were thrown around feely regarding AMC. They went with another biopsy need with a larger gauge, longer needle and more power. With this huge needle in my breast she was having me moved towards her, away from her, they put me on a pillow so it was easier to get to the tissue (apparently my other breast was getting in the way of the needle). Finally the last of the tissue was gotten and we moved to BOB…

BOB was my name for my second mass. It was also on the left breast about 1 ½ inches below AMC. So I named it BOB (for Bottom of Boob). We started again with the skin Lana Cain. This injection didn’t hurt because I still had residual numbness from the previous lump. But when they used the longer needle for numbing, it burned again. This time when she went to make the slice, I could feel sharp and we waited a few minutes before continuing with the procedure. BOB was easier to get to, we had to get 5 samples from BOB, and each time after the Click, and I could feel her pull off the end of the tissue from inside my body when she pulled the needle out. YUCK!! After BOB was done, the Dr put two tiny titanium clips into my breast where the biopsies were done, for reference when future mammograms. After my 1 ½ hr procedure that took 3 hours, I got to sit up and was told that I would need to have another mammogram done before I leave… WHAT??? Are you friggin’ kidding me? After all that, you want to squeeze my breast again??? They cleaned me up (didn’t know I had blood all over me, my gown) the tech took tape and taped up my breast and gave me a new gown to wear. The Radiologist requested that the samples be sent to Georgetown for testing. We were hoping the get the information back by Monday (there was some hope about getting it back on Friday). I begged the tech to please let Dani (remember her still waiting in the waiting room) come back with us. She agreed and left to go get her. I asked my MW then, “This is really not good huh?” She looked at me and said simply, “No.”

We were brought into a larger exam room, and Dani was brought back to us and my MW laughed and said that she definitely had learned her limitations and would not be doing that again. She said that she can handle natural things like birth, she can even assist in cesareans, but she couldn’t handle the emotional and the reality of this. But she was glad that she was with me, and wouldn’t do that again (hahaha). She headed out but promised me a prescription for some Tylenol with Codeine. Before she left Dani asked for all the cards to be put on the table and what was going one with me. After giving my MW the go ahead, she told her. Most cysts, clogged ducts, etc. are round and smooth. What I have (AMC) is a large mass that branches out like a tree, and the edges are not smooth. More times than not… Cancer.

I had the mammogram and once again I was thanking God that the anesthesia was still working as they squeezed. Then I got directions for my care, and picked up my Rx for codeine. I received 2 texts while waiting for my mammogram… Meg and Bridget thank you so much for thinking of me… You both crack me up!!!