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.
Hi Laurie-Jo. Sounds like you have (as mom would say) "really been through it". I am so glad you found it but so sorry you have to go through all this. My sister in law was diagnosed a few week before you. I am going to send her your blog. Perhaps it will help her to not feel so all alone. Hang in there Hon. What exactly does finding it in the nodes mean--do you have to have more chemo or anything? Do they feel they have it all? Sure hope that you feel better soon.
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Aunt Judy