Tuesday, June 30, 2009
My "verification" appointment at the Radiation Oncologist was suppose to take 30 minutes. I had left the "X"s on my body so the appointment would go as quickly as possible. My appointment was at 6pm. I got to the office and was led back by a radiation tech and she explained what a normal appointment would be...
I will be called back from the waiting room by a speaker. Then I will go to one of the dressing rooms, change into my exam shirt (open in the front) and sit on a chair outside the room until I am called.
I did all that and then the female tech led me to the radiation room. It was freezing! She said that it is for us, but for them it feels good (uh, I'm the patient right)? I took my left arm out of my robe and put it up above my head. I laid there while both techs (one male and one female) positioned my on the table over the machine. I know that when I had the CT done, my arm was KILLING me, so I kept trying to roll my hand a few times just so I could hold out longer.
They finally set me up according to my marks and then took some xrays. They came back in and had to move me an inch in one direction, a skosh in another. They took more pictures. This went on a few times. Then Dr. Singh came in and had them lower the table "a breath" and tried it all over again. I asked if I could possibly put my arm down for a minute. "Can you wait until we get one more picture?" Craig (the tech) asked. "I guess" I said. Well, at least five minutes later I was finally able to lower my arm. It burned so bad! It was so numb and prickly all at the same time. Everything seemed to be going fine until it was time for me to put my arm back up.
I placed my arm back into the stirrup and the tech left for the umpteenth time, I thought he said that he would only take one picture, so I figured the picture was taken, I could put my arm down until the next one. After I put my arm down the xray machine went off again. CRAP!! I told the female tech that I brought my arm down. She left to tell Craig and he came in VERY IRRITATED. He yelled that I should NEVER MOVE MY ARM!!! If we were doing radiation it would have gone through all parts of my body and done horrible damage!!
I just needed to move my arm, it hurt so bad! My head was turned and I saw a shelf full of netted helmets. They had "X"s all over them and names. It hit me then that I was laying on a table, half dressed, freezing and in pain because I have cancer. I was by myself there. Nobody was waiting for me in the waiting room. This is how it would be everyday. Okay, maybe not as long... But here by myself, just the same. I started to cry. It was one of those horrible silent cries. You know the one, it is the cry that you try not to make a sound, your body just trembles. The one that you fight your own breathing, trying so hard to breathe normally that it probably sounds worse. If Craig noticed I was crying, he didn't say a word. He just kept mumbling under his breath, "We don't have time for this, if you cannot take it today, we should just send you home and try again on another day." So of course this made me cry even more.
After a few more sets of xrays and slight movements, Dr. Singh came in again to check it. She talked to me and tried explaining what was happening. She saw me crying and shaking from being so cold.
"Can we PLEASE cover her up?" She grabbed a blanket and covered me up.
"She said she was fine." Craig told her.
"Does she look fine? She is crying."
Dr. Singh told me that they would be using both electron and photon radiation (not proton hahaha). It will be very hard on my skin. "Really bad", Craig chimed in. But she said that it won't be in the beginning or the middle, only at the end. Dr. Singh told me that she was happy with the way the photon radiation went, but still is not happy with the electron radiation. She wants to talk with the physiologist that worked on the plan, so that he could agree with her.
While Dr. Singh was telling me about the radiation, Craig was putting on my "permanent marks" AKA the tattoos. They are tiny and dark blue. It stung a little bit, but it wasn't that bad. I believe I have about 5 marks on me they look like little blue vertical dashes.
Then came the time to make my appointment. Since I still have not gotten the electron radiation planes figured out, I needed a double appointment. There were none available, so I am scheduled for 11:40am on Wednesday morning for the drawing of my electron radiation plane (it will have to be drawn on me everyday). Then I will return for my first radiation appointment will be at 5pm on Wednesday.
Craig and Dr. Singh were trying to figure out my appointments and I asked how long my regular appointments would take.
"About ten minutes." Craig answered.
"Ten minutes? Ten minutes?" Dr. Singh said to him, "She has 6 planes of radiation."
"Six planes?" He asked.
"Yeah," She said.
"Oh, that would take about 15 - 17 minutes."
Once Dr. Singh came to sit with me to talk to me, I asked, "Is six planes a lot?" She told me that normal breast cancer is 3 maybe 4. When she saw me get upset, she said that there are some prostate patients that have 7 planes.
Hahaha, is that suppose to make me feel better?
So finally I was done and emotionally exhausted. I realized that my 30 - 45 minute appointment took over 2 hours.
Saturday, June 20, 2009
She is having a trouble coming up with a radiation plan. I guess when they did the CT scan, they found that my mammary lymph nodes were deep in the left side of my sternum, so they were going to have to use both proton and electron radiation. But every time that they would do a simulation, it would leave a "cold" spot... Which happened to be right where my tumor bed is. So THAT won't work. There was three plans that were thought up, and all three failed. Dr. S told me that it is not very often that they see the tumor on inside of my breast. It turns out that she has not been the only person working on this. She has brought in her 3 Imagists and her Physiologist to look at my scans.
It is not all bad news, Dr. S says that they believe that they have come up with new protocol for me, she said that it is the most creative and elegant plan they have ever come up with... But every time they try to simulate the scan, the computer shuts off on them because the computer thinks it is an error. So now she is in talks with the software company to find a way to override the computer and go through with the scan. She believes that they will be able to call me early next week and bring me in for my verification appointment, then hopefully I can start my treatments at the end of the week. About a week later than she originally wanted to start.
Of course I apologized for being so difficult, and she told me that when they complete this plan, it could end up helping not only me, but so many women in the future...
I think she should name the new protocol the LJ2009?? hahahaha!
Wednesday, June 17, 2009
It is out!!
I started the day skipping breakfast and having drop off all my girls to their appropriate locations. My 3 year old and the baby went to daycare (as my 3 year old calls it "Lunch School"), and my 13 year old went to band camp (her first day of High School). So after getting to work a little late, I worked about an hour and a half until I left for the hospital. I met Chris at work and he drove me to the hospital.
We got there at 10:30 and after checking in at admissions, I went to radiology and waited for my turn. About 10 minutes later, Chris and I were walked back to the rooms with a nurse who congratulated me for getting through chemo. She said that this was going to be so much easier than putting it in. There will be no IV, no sedation, just a slit and pull it out....
No IV?? No drugs? No sedation?? What the heck is up that?!!!
I started getting anxious then, I HATE the lidocaine shots, they burn and it hurts. The nurse (seeing my obvious anxiety when she brought me to my room) brought me some Valium. Didn't really get a chance to work when they brought me in and wheeled me out to the operating room.
The group that took my port out, was the same group that put it in. And as soon as they saw Jordan (who of course came with me) they started laughing and remembered me. I was brought into the room, and they asked me turn my head to the left, they didn't even have to move me to the operating table, they just did the surgery on the bed they rolled me in on. I was draped with four blue drapes and my skin was cleaned. The doctor came in and started with the lidocaine. It hurt like hell. I yelled and cried (a little bit).
He cut my skin and pulled the catheter out of the vein and then proceeded pull out the port. He asked if I wanted it. HECK YEAH I do!!
He washed the empty pocket out, then I was stitched up, congratulated again and then I was wheeled back into the recovery room. It took no more than 30 minutes. I came home and went to bed. I am doing good, I am happy that it is out. It does still hurt, but I am sure it will get better.
Saturday, June 13, 2009
The first step in Radiation is the simulation. This is where they take the take pictures and make temporary marks on my chest until a radiation plan can be made.
I went into my appointment at noon. I met with the nurse and she explain to me my skin regiment. I am to use a special lotion 2 times a day, and then at bedtime I have a prescription for a steroid that I combine with some Auquaphor and put it all over my left breast and underarm. After letting me know what kind of lotions and deodorants I can use I signed a consent form for the radiations procedures.
Next I was brought into large room with a CT machine. I was asked to remove my shirt, bra and jewelry and put on a rose colored robe (opens in the front). I came out of the changing area and Erin (the tech) and asked me to lay down on the table in front of the CT machine. She took my left arm and placed it in a form of stirrup above my head. This is for 2 reasons:
- My arms needs to be up so that the radiation can hit my arm pit, where my axillary lymph nodes were.
- The stirrup is placed in the same position every treatment, so that the radiation can be precised every time.
Once my arm is in place and the table is propped up just a bit (this position lowers my lungs and heart more towards my back so they won't get hit with as much radiation) and my feet were strapped together (to be more comfortable for me), I was brought thought the CT scan a number of times, to get the pictures for Dr. S to make her plan for my radiation. At the same time, x-rays were done as well so that they could make a 3D image of my body to make the radiation plan.
It sounds like a simple procedure and for what I have been through, it was. But I was in the chair for about 20 - 30 minutes and my arm was up that long. Oh my goodness, it burnned! I kept thinking during the whole procedure, "this is just like a challenge on the TV show Survivor!"
After Erin was finished, she pulled my body out of the machine and took a black sharpie marker and started making black "X"s on my body. I asked how she knew where to put them. She said that there were red laser lights coming off the walls and ceiling and they make the "X" on my body that she drawers. She explained that these "X"s needed to stay on until my "Verification" appointment (where I get my tattoos). She covered them with a kind of cellophane tape so they would last 2-3 weeks.
I now have 6 "X"s on my body:
- Above my left breast beside my left arm
- On my left aureole, about the 10 o'clock position
- On the outside of my left breast
- On my left side at the bottom of my rib
- In the center of my body, about where my diaphragm is
- On my right side at the bottom of my rib.
My next appointment will be in about 2-3 weeks, this will be my "Verification" appointment, where Dr. S will see if her theoretic plan matches my actual body. Once I am lined up, I will get my tattoos.
This is so humorous, I always said I got my navel pierced so I wouldn't need to get tattoos. Now not only do I get them, they are going to be blue freckles!! Not even something cool. I will be a human "connect the dots".
Tuesday, June 9, 2009
This is just a quick note, so that I can thank my "Chemo Companions"
Chris came to my first Chemo Treatment (with my Mom and my Dad)
My Mom and Dad (Larry and JoAnne) came for Chemo cycles 1 & 2
Nickie (my mother in law) went with me for Chemo #3
Dani came and gossipped with me for Chemo #4
Meg "suffered" through the first taxol (5 hours) with me for Chemo #5
My Mom and Dad came back for Chemos #6 & #7
And as you saw in my previous post, everyone joined me for my last cycle #8.
I just want to thank you all so much for taking time out of your busy schedules to join me on this fight. Everyone says how strong I am, but in fact, I know that if I decided to hide under my bed (or desk as it was) before these treatments, you all would pull me kicking and screaming to my treatment and engage me in amazing conversation for the entire time.
So I don't think so much that it is me that is so strong, I think it is you all that support and love me and keep showing me everyday (along with my children) that there is so much to fight for.
Thank you all so much!
Friday, June 5, 2009
I wanted to share with all of you my last chemo treatment.
I wanted to make it special, so I made Boobie cookies (cookies shaped and frosted like boobies) and then I brought sparkling apple cider. On of my fellow chemo ladies made brownies for my last day too. It was so sweet!!!
These are my chemo nurses (formal name is Oncology Nurses) Jen and Cindy. They are wondeful, they definitely make a bad situation what could be a very sad situation better.
I had invited all my previous "chemo companions" everyone came except my mom and dad (they were back home in Oklahoma, but they called frequently so we knew that they were there), here is me and Nickie (my Mother in law-love)
Me and Jordan, waiting for a chair in the big room.
It had been 16 weeks since we both had started chemo.... Wow!!!
Meg made me shirt that said..
I kicked chemo's Butt!!!"
I was also awarded a pink and rhinestone tiara on my last day!
You KNOW I paraded around the chemo suite with that!!!
I wanted a picture with Meg and she said, "If I can stop my tears.. sure."
We were all excited to see this part end.
Both of us tear free and smiling!!
Me and My wonderul HUBBY
I walked around the sweet handing out cookies, brownies and apple cider.
Enjoying some girl time with Dani!
I meet the same ladies every time I go, these were some of the best women!!!
The bald beauties!!
It was such a hard time, but thank you to everyone that supported me by cards, gifts, balloons, flowers, prayers and thoughts. I truly could not have done this without all of you!!!!
And Chris, Nickie, Dani, Meg and my Mom and Dad (JoAnne and Larry) I will never be able to express my gratitue for all you have done for me, by picking me up and sitting with me for hours on end keeping fighting on that day and for many more. I so truly love all of you so much!!!
Now... Bring on the Radiation!!!