Friday, April 30, 2010

First round Chemo and Radiation treatment

Yesterday morning started off with the Radiation right at 8:00 am. Alex was able to come into the room while they strapped me to the table like Frankenstein's monster. After that everyone cleared the room. The door to this room is no joke either it is about 6-8 inches thick. The actual radiation is done and over with in no time.

We went over to the infusion area at the Oncologist office for the chemo next. The port, as much as I complained for not having any pain management during the procedure, it was SO worth it. Anyone who ever has to go through chemo, get the port! So first they took some blood samples and checked with labs. Whatever they were checking came back fine because they stared the prechemo fluids. They hooked the IV into the port and started with hours of fluids. I'm not sure what they gave me as prep work, but they did infuse saline for 2 hours, something to make me pee, and antibiotic, and a steroid. By that time it was about noon, and we we're finally getting to the chemo. That took maybe an hour. I felt fine through all of it so far.

After the chemo, they started the post-procedure fluids. Two more hours of saline, plus the stuff to make me pee and some other stuff, that is when I really started to feel nauseated! I just knew I was going to heave and that it would be so painful due to the feeding tube in my stomach. The nurses were Johnny-on-the-spot with the anti-nausea medication in the IV. They told Alex it would make me loopy, but I wouldn't get sick. Man were they right!!

So after we got home I went straight to bed. I woke up and realized I needed help. I has so thirsty and needed some water; I needed to pee; I couldn't figure out how to turn on the TV or find the remote; I had all these things I needed and couldn't figure out how to do.

So I decided to start with the basic, just go pee then I'll deal with the rest. So I went to the bathroom and sat down to pee. I don't know how long I sat there, but it must've been a while. I decided I knew I would be finished peeing after I had sung the alphabet song to myself twice. Yes twice. I sang it once to myself in lower case, then started to sing it to myself in upper case. Well as I was singing and got to the Upper J and I lost it. I couldn't remember what comes after J. Shit. Now, I know I am really f*cked up!!!. I've lost my J's.

I finally get myself back into my bedroom. When I look, well, Alex put 5 bottles of water on my nightstand, but I couldn't figure out how to open them. The room was dark and so I thought I would text Alex to come up, but I couldn't find my cell phone to text him. I remembered I had gum in my purse and that would get my mouth moist. I finally dug it out and but couldn't get it open. At this time I realize I am hallucinating. Seriously. It was like a scene out of "Tommy Boy" when he is in the cop car and the nitrous oxide goes off in the back. Well, I can't have the kids see me stoned out of my gourd. I hear a sound outside my door and peak out. It's Olivia. Thank GOD!!!

I whisper and pull her into my room, rambling about losing my J's. She told me the kids were down for the night, so I know I am safe to go downstairs but I was too scared to walk down the them so I scooted down on my bottom. I told Alex I think I am hallucinating because I am SOO out of it and seeing trails! He took me upstairs and helped me open the water bottles. I think I drank 3 of them down immediately. He got me some dinner, and help me get ready for bed which couldn't be easy. He was my saviour! He found the phone that he laid right at my head, so when I woke up it would be easy to find. He turned on the TV because the remote was laying down right by my phone, right by my head. As for the J's he assured me if I know my alphabet in lower case, then I know them in upper case as well.

Needless to say, Alex was a little hesitant to leave me alone today. He didn't know if I was still going to be high this morning and able to care for myself, much less the kids. So he stayed home until Olivia got out of 1st period and was able to come home and help out. So all in all, I guess it went all right.

Saturday, April 24, 2010

Something new everyday

Yesterday I had a port put in. (Was it really just yesterday?) Chemotherapy ruins your veins, and as it is I only have one good vein for blood to be drawn from. My choice was a pic line in my arm or the port in my chest. If I did the pic line, I would have to tape it off every time I want to take a shower. So that made it a no brainer, I want the port! It is under the skin and I can keep it in for years. There is some maintenance with it. I'll need to go to the doctor every month and have it flushed, but that seems minor.

I had to go to CMC University to have it inserted. We had to be there at 7:00 am. Since I live on the complete opposite side of Charlotte, we left the house at 6:00 am. One of the nurses in the OR with me, got caught in traffic. She was 45 minutes late and in a crappy mood. The technician aiding the doctor was hungover from the Bon Jovi concert the night before. I really wish she would have kept that to herself, she wasn't really inspiring confidence. I didn't even meet the doctor until I was in the OR and we were about to get started. The only thing he said to me was, "What is your bra size?" I answered 36D and he told the tech, they'll need to use the longer catheter and then I was put under.

I would like to say at this point I went to sleep wondering what that was all about. But, they gave me the local shots of Lidocaine and started cutting. They had put the medicine in my IV so I would be sedated and have amnesia of the procedure, but none of it worked. The lidocaine helped so that I felt less pain, but it was still sharp and burning. My head was turned to the left and it had a sheet over it in a tent fashion, they were using my face to set their tools down. I tried to remain calm and do deep breathing to control the pain. I could feel they had gotten the port in. It reminded of a c-section where the doctor is pulling and you feel like you are going to come off the table. Well when they got the catheter into my vein it was in my heart. I could hear the heart monitor beeping like crazy. So the doctor said we are going to have to take it out.

I am freaking out at this point. My brain was racing. I need to have the chemo and I have to have this port. "Please don't take it out!" The doctor realized I was awake. I was crying my eyes out partly from the pain, and partly because I was afraid they wouldn't be able to complete it. He told the nurse I was awake and she asked how I was doing. "It hurts. I can feel everything, but I need to have this put in." After that I don't see her again. She told the doctor she is out of medicine. The doctor and technician continue. He took the lidocaine and shot the area up again 4 more times. That helped some, but every time they put the catheter into my heart, my blood pressure shot up, so they took it out 2 more times to cut the catheter shorter. They finally got it into a position that my blood pressure stayed stable and they sewed me up. I found out later, he asked my bra size because he was concerned the weight of the breast tissue would dislodge the catheter.

So now I am traumatized. Besides being told I have cancer, inoperable cancer. My next fear is having a surgery and the sedation not working, being awake and feeling it all. Part of what upset me is that, they were so cold about it. Either they didn't believe me, or they just didn't care. I was scared half to death under that sheet and the nurse could have at least reached in and held my hand and told me it would be ok. Lie to me, just try to comfort me.

The technician went out and talked to Alex. She told him they gave me enough medicine to knock me out for 2 days. Maybe they did, but I somehow didn't receive it. I don't know if there was a problem with the IV or if I have built up a tolerance to that drug. I have to get a feeding tube inserted on Monday. The feeding tube is usually an outpatient procedure, but since I have developed a tolerance to the medication, they will have to admit me to the hospital and do it under anesthesia.

So I have an MRI tomorrow, feeding tube Monday, learning all about chemo on Tuesday and a dry run on the radiation, then Wednesday is when it all starts officially, chemo and radiation together.

Monday, April 19, 2010

Great News!

I got the results from the PET scan back and the cancer is localized in my tongue and has not metastasized! When the doctor told us, I could barely pay attention to the rest of what he was saying. I am going to live, that is what I heard. I tried to process the rest of the information that he was giving me, but all I could think is I will live through this.

I start radiation and chemo soon. I am still scared half to death but I am hoping writing about it helps ease the fear of the unknown. My doctors seem very confident and competent, with good bed side manners. The nurses have been very kind and genuine. I will just put my faith in them and God to carry me through this.

The first step is tomorrow, I go into the radiation clinic to have a mask made. This mask will help the technicians line my neck up each time so the zap the right parts. After that I am off to the dentist to make sure all my teeth are in good shape. Since I'll be receiving radiation at my bottom teeth, there is a chance I could loose them later, so I need to be vigilant about their care. I will be meeting with my Oncologist on Wednesday to go over the chemotherapy schedule.

I am kind of equating all of this to a pregnancy. When you first find out you are scared to death, but know if you follow the doctors orders, you'll have a healthy little new life after all is said and down. Same here. The doctors know the steps of taking care of me. They've seen this cancer before and know how to treat it. If I listen to what they say and follow directions, there will be a new life at the other side as well, mine. I will be alive and continue on. I will look back at this and remember how scared I was, and will hopefully laugh. It's just another stepping stone in life. It's just something else that will make me stronger and hopefully compassionate and understanding as well.

It has been one week since I learned this new truth, but I can already feel how it is starting to change me. The sunshine is much brighter, my children's laughter tickles me deeper and the little things just don't bother me the way they used to. Best of all I have my best friend by my side giving me all his strength and support, cheering me on. Having Alex with me, I can endure anything.

Wednesday, April 14, 2010

Squamous Cell Base Tongue Carcinoma

I have cancer. I have cancer. It doesn't matter how many times I say it, it doesn't feel real. Yet at the same time, it does. I know it's true way down deep where you can't lie to yourself or hide. I woke up with that thought this morning. I am 36 years old and have never smoked or used any tobacco, ever and yet I have an oral cancer. How can this be? It's not fair, I followed the rules and still I feel like I am being punished. I have 3 children under the age of 5 who need me. They need their mother, so I am going to fight, fight with every once of strength in me.

It's on my tongue, at the base. They can't remove it so we will treat it with chemo and radiation. Tomorrow I have a PET scan to see if it has spread and to diagnose the stage. I know it is at least stage 2 due to it's size. It's the size of a golf ball. I had a biopsy yesterday and they were able to reduce it by a third. I won't get the results until Wednesday, which seems like an eternity from now. When I have the radiation on my tongue, I won't be able to swallow for weeks so I will have to have a feeding tube inserted into my stomach. I am so scared.

I am going to blog about what is to come, what I am going through and for my children. One day when they can read, they will know how much they were loved by me even if they can't remember me. My greatest fear is not dying, it's not being here for Alex and my kids.