1. There is a reason they make bras with pouches…so your fake one won’t fall out!!! The fake one keeps turning in my bra and has peeked out and fallen out this past week.
2. Don’t make jokes at the expense of your friends. Accidently hurt a friend this week, due to a joke being taking seriously. Not a good thing.
3. When they say don’t talk in the radiation room they mean it. I started to ask questions the other day about what exactly they were doing and the radiation guy was “Don’t move!! We will answer your questions after it is all over.” I thought oh boy I am in trouble. He did answer my questions at the end.
4. They are radiating my chest from my breast bone over to my back/humorous head then two inches under my mastectomy line to the middle of my neck. So far so good no skin damage right now.
My Good News
Two people in my life are getting married!!! I am a Matron of Honor in one wedding and Campbell will be a flower girl. We also found out my sister in law Sara is pregnant!!! I am going to be an Aunt. Plus two of other dear friends are also expecting babies.
It has been interesting looking for dresses though. We have to work around the fake boob. So no V-necks or plunging neck lines for me:)
Wednesday, February 24, 2010
Wednesday, February 17, 2010
Radiation
Radiation started Monday!! I go every Monday-Friday at 3:30 for the next six to seven weeks. It is a lot different than chemo. Radiation is lonely. The room is huge with a door that is at least six inches thick. After they put me in the playboy position and get me all lined up (that is why I am sporting the new tats); the radiation therapist (RT) leaves the room. Then the machine starts…you know it is starting because all you here is this buzzing or ticking sound. The sound stops, the RT comes back in and puts a different head onto the machine. She leaves…the noise starts all over again. The RT does this one more time and the machine starts back up and makes its lovely noise. All the while, I can’t move….which means I can’t talk!!!!! Those that know me probably realize that this torture!!!!!!!!!!!!!!!!!!!!!!
This is what the general experience is like. Every other day, the RT puts this ½ inch thick piece of plastic (they call it a bolus) that conforms to my chest. It stays on for two rounds. The day without the bolus takes about five minutes longer. Total time in and out is about 30 minutes. On Wednesdays I meet with Dr. Scully and get a chest x-ray. I slather this cream on my chest twice a day. It will help with this skin changes.
My hair is coming back. It is almost 1 ½ long. YES!!! This is good because I just realized I can not wear fleece and knitted caps for much longer. People will really think I am stranger then I really am. I have been experiencing some issues with remembering my words. I was on the phone with my sister and completely forgot why I called. I left this long rambling message for her that told her I had called for a reason and that if I kept talking to her answering machine I would actually remember it. I finally remembered at 8:00 o’clock that night. She tells me it is o.k. and that it is just part of the side effects.
This is what the general experience is like. Every other day, the RT puts this ½ inch thick piece of plastic (they call it a bolus) that conforms to my chest. It stays on for two rounds. The day without the bolus takes about five minutes longer. Total time in and out is about 30 minutes. On Wednesdays I meet with Dr. Scully and get a chest x-ray. I slather this cream on my chest twice a day. It will help with this skin changes.
My hair is coming back. It is almost 1 ½ long. YES!!! This is good because I just realized I can not wear fleece and knitted caps for much longer. People will really think I am stranger then I really am. I have been experiencing some issues with remembering my words. I was on the phone with my sister and completely forgot why I called. I left this long rambling message for her that told her I had called for a reason and that if I kept talking to her answering machine I would actually remember it. I finally remembered at 8:00 o’clock that night. She tells me it is o.k. and that it is just part of the side effects.
Friday, February 12, 2010
Seven New Tattoos!!!
Today I had my pre radiation meeting at the cancer care center. I thought I was going to get x-rays..what a dummy I am. Not only did I get x-rays, I also got seven new tattoos. I never thought I would be so brave. The RT tattooed me by wiping the ink on my chest then using a needle to permanently put the ink in place. Besides the tattoos I also got more Sharpie marks and some bright blue paint pen on my chest too. Radiation is set for every Monday – Friday for the next six weeks.The RT explained to me about the care of the treatment site and putting on the cream. So I should be a set. I am really nervous about this radiation thing more so than chemo.
Wednesday, February 10, 2010
Four Appointments and A Snow Storm
On Monday, Todd and I set out on a day full with four appointments. For the first appointment we went to the torture room (i.e.: therapy). There the torture woman brutalized my chest, back and armpit. By torture, I mean she stretches my skin in those areas. Then she takes her fingers and runs them down these lymph cords that have developed which happens to be PAINFUL. She taught us a few more stretches to do at home and she taught Todd how to strum my cords. She even gave me souvenirs: a large kidney bean and small kidney bean shaped pad that I am suppose to wear under my armpit. Then told me to buy a sports bra to keep the pads in place. I laughed but I bought a useless bra for the purpose of holding the stupid thing in place. Why I need a bra that will make my una-boob look even worse is beyond me?
Number two appointment was with radiation. I got my mold made and the way they make it is really cool. They have this round plastic thing filled with air and Styrofoam beads. They form it around my upper body then take the air out. I am in a position that you would see in a Sports Illustrated Swimsuit addition; my arms above my head and my head turned to the left almost touching my shoulder. They took a picture of me in this pose, too. I will get into this position every time I go for radiation. Then Dr. Scully came in and used Sharpie Marker on me. She drew all over my chest. When she was done, it looked like Campbell had drawn all over me. I thought it was so cool, I made Todd come in and check out the room. It is huge and looks like it belongs in a space station. The RT told me that the room I was in is similar to the room that I will be in for radiation.
Number three was at the Imaging Center. The RT meet Todd and I over there. She brought my mold with her. I had to lay down on my mold. It took me several minutes to find the right spot. You have to get into that same position and if you don’t it is UNCOMFORTABLE. Then the RT took a green marker and wrote on my chest again. I had a CT Scan to make sure everything will line up. Then they informed me that I have to keep these green X’s on my chest in till Monday. They put this tiny circle sticker on top of them to try to keep them from fading. If they fade I have to go back to the Center and they will remark me. When Campbell saw it she said, “That is weird Mommy!”. I hope she doesn’t get any ideas.
Last appointment was with Dr. Kakani and Herceptin. Dr. Kakani talked to me about the study. We decided to do the study that I blogged about earlier. I was so tired by this time that I fell asleep during my IV drug. Nurse Jackie was so awesome. She turned off lights and left me alone. Afterwards, I made a comment about needing to bring my photos of my boob voyage party with me. She said that would be good and told me that she likes me a lot better when I am my usual self. I promised that I will be not so tired.
On Tuesday, the roads were not very good so I stayed home. The kids wanted to go to Bonnie’s and not stay home. So I was home alone and decided to have a pity party. I needed it! I figure if I do this every now and then it is o.k. I just need to make sure I snap out of it. I did and am now good to go. Waiting for the Radiation people to call me about scheduling my appointment is nerve wracking. I am sure once I get started I will get good to go.
Number two appointment was with radiation. I got my mold made and the way they make it is really cool. They have this round plastic thing filled with air and Styrofoam beads. They form it around my upper body then take the air out. I am in a position that you would see in a Sports Illustrated Swimsuit addition; my arms above my head and my head turned to the left almost touching my shoulder. They took a picture of me in this pose, too. I will get into this position every time I go for radiation. Then Dr. Scully came in and used Sharpie Marker on me. She drew all over my chest. When she was done, it looked like Campbell had drawn all over me. I thought it was so cool, I made Todd come in and check out the room. It is huge and looks like it belongs in a space station. The RT told me that the room I was in is similar to the room that I will be in for radiation.
Number three was at the Imaging Center. The RT meet Todd and I over there. She brought my mold with her. I had to lay down on my mold. It took me several minutes to find the right spot. You have to get into that same position and if you don’t it is UNCOMFORTABLE. Then the RT took a green marker and wrote on my chest again. I had a CT Scan to make sure everything will line up. Then they informed me that I have to keep these green X’s on my chest in till Monday. They put this tiny circle sticker on top of them to try to keep them from fading. If they fade I have to go back to the Center and they will remark me. When Campbell saw it she said, “That is weird Mommy!”. I hope she doesn’t get any ideas.
Last appointment was with Dr. Kakani and Herceptin. Dr. Kakani talked to me about the study. We decided to do the study that I blogged about earlier. I was so tired by this time that I fell asleep during my IV drug. Nurse Jackie was so awesome. She turned off lights and left me alone. Afterwards, I made a comment about needing to bring my photos of my boob voyage party with me. She said that would be good and told me that she likes me a lot better when I am my usual self. I promised that I will be not so tired.
On Tuesday, the roads were not very good so I stayed home. The kids wanted to go to Bonnie’s and not stay home. So I was home alone and decided to have a pity party. I needed it! I figure if I do this every now and then it is o.k. I just need to make sure I snap out of it. I did and am now good to go. Waiting for the Radiation people to call me about scheduling my appointment is nerve wracking. I am sure once I get started I will get good to go.
Thursday, February 4, 2010
Join Me!!!
http://race.komenindy.org/site/TR/Race/General?team_id=37060&pg=team&fr_id=1070
If you have nothing to do on April 17th join me and some of my family at the Komen Race for Cure in Indianapolis. I wasn't going to do..afraid it would be to emotional but two nights ago I talked with a survivor and she said it was amazing for her to go. It costs $28 to sign up. You get a shirt and the opporunity to hang out with me!!!! Just click on the link above to sign up to walk with our team.
If you have nothing to do on April 17th join me and some of my family at the Komen Race for Cure in Indianapolis. I wasn't going to do..afraid it would be to emotional but two nights ago I talked with a survivor and she said it was amazing for her to go. It costs $28 to sign up. You get a shirt and the opporunity to hang out with me!!!! Just click on the link above to sign up to walk with our team.
Campbell, Back to work and that new Boob!!
We were really worried about Campbell. She had stolen a couple of items in the last week and has been really clingy to me. Example: I stub my toe and said, "Ouch!". She got really worried about me. Todd and I and her doctor decided she should talk to a professional. So on Wednesday she went. The professional felt that Campbell was doing well. She told Todd and I that we need to keep it as normal as possible and to continue to keep Campbell in the loop. Todd and I have experience people telling us...we are telling Campbell too much. But the therapist said that we are doing all the right things. She said unless kids get headaches, stomach aches, and/or begin to start fights we should not worry.
I went back to work on Monday part time. I was shocked by how exhausted I have been. I am working about four hours to five hours a day. By the time I get home I am ready for a nap. I am hoping that I soon can start back doing inspections. I still do not have full range of motion and can only do desk work.
My new boob is made out of fiber fill. So it is soft and not real like at all. On Sunday and Monday, I wore it for a few hours. It is all I can stand..after awhile it tends to rub on my skin and starts to bother me. The other day I was going to go without and Todd said I look a little funny. So I looked in the mirror and it was really obvious that I was boobless. We decided I can go boobless only with lots of layers on. On Tuesday, I went to a meeting and went to get into my bag and there was my fake boob. I started laughing (those that know me real well know my laugh is not quiet!) and the two MEN I was meeting with asked me what was funny. So I pulled out my boob and showed it to them. One of them handled it real well and even checked it out. The other one got a little red faced. First man has followed my blog and facebook, so he knew how opened I have been about this experience; the second man had no clue.
I met a lady who has survived breast cancer for five years. This lady was different than all the survivors I have ever meet. She understood the difference between Inflammatory Breast Cancer and Breast Cancer. She did not try to tell me that what we experienced was the same. She said when they first were looking at her cancer, the doctors told her it may be IBC. She said she researched IBC and understood how aggressive it is. She actually said that she had a feeling of relief when they told her it was not IBC.
One of the hardest things for me this past seven months has been explaining what IBC is and how it differs from regular Breast Cancer. So to honor my conversation this week I have decided to repost my sypmtoms below. Please spread the word about IBC...
Symptoms of IBC may include redness, swelling, and warmth in the breast, often without a distinct lump in the breast. The redness and warmth are caused by cancer cells blocking the lymph vessels in the skin. The skin of the breast may also appear pink, reddish purple, or bruised. The skin may also have ridges or appear pitted, like the skin of an orange (called peau d'orange), which is caused by a buildup of fluid and edema (swelling) in the breast. Other symptoms include heaviness, burning, aching, increase in breast size, tenderness, or a nipple that is inverted (facing inward) (3). These symptoms usually develop quickly—over a period of weeks or months. Swollen lymph nodes may also be present under the arm, above the collarbone, or in both places. However, it is important to note that these symptoms may also be signs of other conditions such as infection, injury, or other types of cancer (1).
http://www.cancer.gov/cancertopics/factsheet/sites-types/ibc
I went back to work on Monday part time. I was shocked by how exhausted I have been. I am working about four hours to five hours a day. By the time I get home I am ready for a nap. I am hoping that I soon can start back doing inspections. I still do not have full range of motion and can only do desk work.
My new boob is made out of fiber fill. So it is soft and not real like at all. On Sunday and Monday, I wore it for a few hours. It is all I can stand..after awhile it tends to rub on my skin and starts to bother me. The other day I was going to go without and Todd said I look a little funny. So I looked in the mirror and it was really obvious that I was boobless. We decided I can go boobless only with lots of layers on. On Tuesday, I went to a meeting and went to get into my bag and there was my fake boob. I started laughing (those that know me real well know my laugh is not quiet!) and the two MEN I was meeting with asked me what was funny. So I pulled out my boob and showed it to them. One of them handled it real well and even checked it out. The other one got a little red faced. First man has followed my blog and facebook, so he knew how opened I have been about this experience; the second man had no clue.
I met a lady who has survived breast cancer for five years. This lady was different than all the survivors I have ever meet. She understood the difference between Inflammatory Breast Cancer and Breast Cancer. She did not try to tell me that what we experienced was the same. She said when they first were looking at her cancer, the doctors told her it may be IBC. She said she researched IBC and understood how aggressive it is. She actually said that she had a feeling of relief when they told her it was not IBC.
One of the hardest things for me this past seven months has been explaining what IBC is and how it differs from regular Breast Cancer. So to honor my conversation this week I have decided to repost my sypmtoms below. Please spread the word about IBC...
Symptoms of IBC may include redness, swelling, and warmth in the breast, often without a distinct lump in the breast. The redness and warmth are caused by cancer cells blocking the lymph vessels in the skin. The skin of the breast may also appear pink, reddish purple, or bruised. The skin may also have ridges or appear pitted, like the skin of an orange (called peau d'orange), which is caused by a buildup of fluid and edema (swelling) in the breast. Other symptoms include heaviness, burning, aching, increase in breast size, tenderness, or a nipple that is inverted (facing inward) (3). These symptoms usually develop quickly—over a period of weeks or months. Swollen lymph nodes may also be present under the arm, above the collarbone, or in both places. However, it is important to note that these symptoms may also be signs of other conditions such as infection, injury, or other types of cancer (1).
http://www.cancer.gov/cancertopics/factsheet/sites-types/ibc
Therapy
I have been to therapy twice now since my initial appointment. It is an interesting experience. They take their hands and pull or stretch the skin by moving it in two different directions. I also have some cording (which means the lymph node cords have gotten big..today I learned they do not really understand why it happens) in my armpit. So they strum it like a guitar and also put some pressure on it to make it go away. Then they try to get my swelling in my armpit down by "massaging" the skin. I left therapy today with this tape on my back. The tape is put in place to help lift the skin up so the extra fluid will move to a place that has lymph nodes. Lymph nodes will then in return move the fluid.
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