Today I had an appointment at 9am at the hospital down in Madision for my first infusion of Herceptin. I was given this drug last year as well and altough you can have an allergic reaction to it the first infusion, I did not have a problem. So I thought I would be fine today. However, it did not turn out that way. About 40 min into the infusion I started having some chest pain. I couldn't breathe in deep without pain and coughing. Then I started to get cold and started shaking. At this point I decided I needed to let the nurse know what was going on. By then it had been an hour into the infusion. When she got into the room I was shaking really bad... full body convulsions. I was afraid that I was going to have a heart attack or seizure. It was really scary, but the nurse stopped the infusion and injected me with benadryl and another allergy medication.
The benadryl knocks me out so I had to lay down and do deep breathing. After a bit I finally got the shakes to stop. They observed me for an hour and sent me on to the other side of Madison for radiation. Since I was not able to finish Herceptin I will have to go in next week sometime to finish it.
I will have radiation everyday up to 5 1/2 weeks depending on how my body reacts. They did give me a stronger pain medication and something to help with the muscle spasms during radiation. So I will be trying that Monday and praying it works.
My oncologist spoke to me today and told me that our goal is to stop the cancer on the chest with radiation and if we could control the spot in the liver then in 6 months to a year we can remove it as long as there are no other spots where the cancer has spread.
She says the goal is still cure... I was confused by this. I was under the impression that once the cancer matastisis(spreads to other parts) and you are in stage IV then you are not curable.
She said that there are some very rare cases where women with only one spot where the cancer has spread that were able to be cured.
Although I know this is super rare it is something to hope for.
Friday, September 17, 2010
Thursday, September 16, 2010
Biopsy Results
Well, I got home pretty late Tuesday night... just in time for bed. My sister and mom and dad had taken my little one home with them so I could sleep the night through - hopefully. Kenzie had not been sleeping well this week. She knows something is going on and has been restless.
I was supposed to get the biopsy results Thursday; however my oncologist knew I had an appointment Thursday and that Dean would not be home until later. So she kept checking for the results and called me at 9:40pm Wednesday with the results.
The cancer has spread to my liver. I am now at stage IV. This is not curable; only treatable for a time. This result made the surgery null and void. It would be pointless go through the pain and all the problems it can cause when it can not cure me. Therefore, I began radiation today.
The radiation itself is not painful yet, but it is very painful to lay with my arms above my head for 2 hours. Today they did x-rays and at my request a radiation treatment. I asked they start treatments today because my chest looks worse and worse everyday. The redness is spreading before my eyes and it is swelling daily. I felt I needed to do something to stop the spread.
I am going to try to take a stronger pain medication before my appointment tomorrow and lorazepam (at their suggestion) to see if it will make it less painful. It has been hours and I am still sore from my appt.
Tomorrow morning I have intervenous Herceptin (Her2 blocker that did not work before but they have no other options) and then I have radiation at noon. It will be a long day.
My sister is leaving Saturday, but it was wonderful to have her here while I could. I will have radiation daily for 6 weeks... the worse thing is the radiation is being given in Madison 45 min one way... it will be long days and very expensive. And if the pain does not get better it will be very hard on me mentally, emotionally, and physically. I was in tears during the treatment and had to ask them to stop to give my shoulders and arm a rest.
I am very upset at the results and confused as to why God is allowing this to happen and to let it get worse and worse. I am frustrated that I never seem to get a break and nothing is ever easy for me. I know God has a plan I just wish He would clue me in so I could know what is going on and maybe have more acceptance to my ultimate fate.
I was supposed to get the biopsy results Thursday; however my oncologist knew I had an appointment Thursday and that Dean would not be home until later. So she kept checking for the results and called me at 9:40pm Wednesday with the results.
The cancer has spread to my liver. I am now at stage IV. This is not curable; only treatable for a time. This result made the surgery null and void. It would be pointless go through the pain and all the problems it can cause when it can not cure me. Therefore, I began radiation today.
The radiation itself is not painful yet, but it is very painful to lay with my arms above my head for 2 hours. Today they did x-rays and at my request a radiation treatment. I asked they start treatments today because my chest looks worse and worse everyday. The redness is spreading before my eyes and it is swelling daily. I felt I needed to do something to stop the spread.
I am going to try to take a stronger pain medication before my appointment tomorrow and lorazepam (at their suggestion) to see if it will make it less painful. It has been hours and I am still sore from my appt.
Tomorrow morning I have intervenous Herceptin (Her2 blocker that did not work before but they have no other options) and then I have radiation at noon. It will be a long day.
My sister is leaving Saturday, but it was wonderful to have her here while I could. I will have radiation daily for 6 weeks... the worse thing is the radiation is being given in Madison 45 min one way... it will be long days and very expensive. And if the pain does not get better it will be very hard on me mentally, emotionally, and physically. I was in tears during the treatment and had to ask them to stop to give my shoulders and arm a rest.
I am very upset at the results and confused as to why God is allowing this to happen and to let it get worse and worse. I am frustrated that I never seem to get a break and nothing is ever easy for me. I know God has a plan I just wish He would clue me in so I could know what is going on and maybe have more acceptance to my ultimate fate.
Wednesday, September 15, 2010
more waiting
So, I went in to see the surgeon yesterday. I thought I was going to get the results of the tests and discuss the doctor's willingness to do surgery. However, it did not go as I planned. The brain MRI was clean. The CT scan was clean besides this unusual spot on the liver that did not appear to be cancer. The Pet scan however, showed a 2 cm spot on the liver. So now we have conflicting tests. In order to figure out if it is cancer or not they wanted to do a biopsy. They scheduled me for an ultrasound guided biopsy that day. So the brief appointment turned into an all day affair.
The surgeon said she was definitely willing to do the chest wall ressection if the biopsy comes back negative. She said the surgery will only give me a 15-20% chance of beating the cancer and although she will typically never do this surgery with that percentage she felt that I look great a year after chemo. I am young and "healthy" and she was willing to do whatever she could to help me have a longer life.
I went int about 2 pm for the ultrasound. They could find the spot on the ultrasound but it looked much smaller then on the Pet scan. So they did a biopsy through my stomach - actually they took 2. The hope is that they got the spot and will get an accurate result as to if it is cancer or not. If it comes back as clean the doctors have to decide if it really is accurate or not, because of the large spot on the Pet scan they have to firgure out what it is before we continue.
If it really is negative then in the next 2 weeks I will have surgery. If it is cancer then I will begin radiation and chemo. If it is cancer then the only thing they can do is try to control it to elongate my life as long as they can.
As you can probably realize, I am not happy with this choice. I don't want to have months to live. I want to be here for years. I want to see my baby grow up. I am willing to sacrifice mobility in my left arm and all the complications that will come along with the chest wall ressection if it can possibly give me more time.
The chance of it curing me is so small, but at least it is a chance and it is one I have to take.
The surgeon said she was definitely willing to do the chest wall ressection if the biopsy comes back negative. She said the surgery will only give me a 15-20% chance of beating the cancer and although she will typically never do this surgery with that percentage she felt that I look great a year after chemo. I am young and "healthy" and she was willing to do whatever she could to help me have a longer life.
I went int about 2 pm for the ultrasound. They could find the spot on the ultrasound but it looked much smaller then on the Pet scan. So they did a biopsy through my stomach - actually they took 2. The hope is that they got the spot and will get an accurate result as to if it is cancer or not. If it comes back as clean the doctors have to decide if it really is accurate or not, because of the large spot on the Pet scan they have to firgure out what it is before we continue.
If it really is negative then in the next 2 weeks I will have surgery. If it is cancer then I will begin radiation and chemo. If it is cancer then the only thing they can do is try to control it to elongate my life as long as they can.
As you can probably realize, I am not happy with this choice. I don't want to have months to live. I want to be here for years. I want to see my baby grow up. I am willing to sacrifice mobility in my left arm and all the complications that will come along with the chest wall ressection if it can possibly give me more time.
The chance of it curing me is so small, but at least it is a chance and it is one I have to take.
Thursday, September 9, 2010
Next Step
I met with the radiologist oncologist this morning. He felt that although it has higher risks of complications he was willing to do more radiation. According to him it takes 2 years after radiation for your body to recover 50%. I had radiation 9 months ago. My body has not healed very much in that time and the risk of open lesions and damage to ribs and organs is much higher.
He also felt it would be worth looking into more surgery. He set up an appointment with a surgeon for Tuesday. Monday I have a CT Scan, Pet scan, and MRI to determine if the cancer has spread anywhere else. This will also help determine if surgery would even be worth it. It is very possible that the surgeon will decline the surgery. It is risky and very hard to do after a previous surgery and radiation. If the surgery is done then it will be to remove all the tissue and most if not all of the muscle. This leaves the problem of healing and covering the open area with skin.
If the surgeon refuses to do surgery then I will begin radiation on Wednesday and continue daily for 5-6 weeks. This time it will be in Madison so it will be a 45 min drive one way and a 45 min radiation session. It will be hectic, but whatever needs to be done to try to get rid of this cancer I will do.
He also felt it would be worth looking into more surgery. He set up an appointment with a surgeon for Tuesday. Monday I have a CT Scan, Pet scan, and MRI to determine if the cancer has spread anywhere else. This will also help determine if surgery would even be worth it. It is very possible that the surgeon will decline the surgery. It is risky and very hard to do after a previous surgery and radiation. If the surgery is done then it will be to remove all the tissue and most if not all of the muscle. This leaves the problem of healing and covering the open area with skin.
If the surgeon refuses to do surgery then I will begin radiation on Wednesday and continue daily for 5-6 weeks. This time it will be in Madison so it will be a 45 min drive one way and a 45 min radiation session. It will be hectic, but whatever needs to be done to try to get rid of this cancer I will do.
Wednesday, September 8, 2010
Biopsy Results
Well, I got the results today and they were not good. The cancer is back again. My doctor said the only way to possibly get rid of it is to do more radiation. However, we do not know if it is even possible to do more, because I have already had the maximum amount of radiation I can have... I meet with a different radiation oncologist tomorrow to see what he thinks he can do if anything.
Either way I will begin a different intervenous chemo and Herceptin. This treatment will only help control the cancer. With only this treatment and not the radiation I am looking on chemo until the end of my life which is measured in months to years rather then in years. This does not settle well with me.
I am going to be blatantly honest. I am furious. I do not think it is fair that I am only 30 years old and have a 2 year old baby and my life is going to be cut short. I can't bear to think about leaving my baby. I want to see her grow up. I want to be here to teach her, love her, train her, cherish her. I don't even know how to think right now. I can't even believe this is happening!
I was not expecting to hear that I may not have long to live. I was fully expecting to hear the cancer had returned, but figured there was some kind of chemo or something that could take care of it. I am angry, hurt, sad, devastated, and confused right now.
Either way I will begin a different intervenous chemo and Herceptin. This treatment will only help control the cancer. With only this treatment and not the radiation I am looking on chemo until the end of my life which is measured in months to years rather then in years. This does not settle well with me.
I am going to be blatantly honest. I am furious. I do not think it is fair that I am only 30 years old and have a 2 year old baby and my life is going to be cut short. I can't bear to think about leaving my baby. I want to see her grow up. I want to be here to teach her, love her, train her, cherish her. I don't even know how to think right now. I can't even believe this is happening!
I was not expecting to hear that I may not have long to live. I was fully expecting to hear the cancer had returned, but figured there was some kind of chemo or something that could take care of it. I am angry, hurt, sad, devastated, and confused right now.
Tuesday, September 7, 2010
News Interviews
In an effort to inform other women about Inflammatory Breast Cancer I did a few interviews. I am sincerely hoping my story helps other women detect the cancer early, and give inspiration to those who are going through it.
http://www.wkow.com/Global/story.asp?S=13029036
http://www.fdlreporter.com/article/20091007/FON0401/91006122
http://www.lasentinel.net/The-Secret-Cancer.html
http://www.hvpress.net/news/123/ARTICLE/7881/2009-09-23.html
http://www.uwhealth.org/news/inflammatorybreastcancer/20831
http://www.channel3000.com/localvideo/index.html?
http://www.wkowtv.com/Global/story.asp?S=10750133
http://www.wkow.com/Global/story.asp?S=13029036
http://www.fdlreporter.com/article/20091007/FON0401/91006122
http://www.lasentinel.net/The-Secret-Cancer.html
http://www.hvpress.net/news/123/ARTICLE/7881/2009-09-23.html
http://www.uwhealth.org/news/inflammatorybreastcancer/20831
http://www.channel3000.com/localvideo/index.html?
http://www.wkowtv.com/Global/story.asp?S=10750133
Who Am I?
I am a wife, a mother, a christian, a cancer victim, and a fighter. I was diagnosed with a rare, aggressive cancer April 2009. This cancer is virtually unknown. Inflammatory Breast Cancer accounts for 2-5% of breast cancers. Rare, yes, but yet on that "rare" chance I have it.
I fought my way through Chemotherapy, a double mastectomy, and radiation. Shortly after my mastectomy I found a "rash". When it did not go away I had it biopsied and found the cancer had returned. I was devasted. As a result, they maximized my radiation and put me on an oral chemotherapy to fight it.
I had several scares after this, but they all came back negative for cancer. Yet, everytime I fear it will be the time when I hear I have it again.
I am going through another one of those times now. I have another red spot, and more splotchy red spots appearing on my chest. I am scared to death that it is cancer and that I will die from this cancer. I try to not think about it, but I can't help but break down and weep at the thought of once again going through chemotherapy, being so sick I can hardly take care of myself let alone my baby girl, and losing the hair I finally grew back.
I just don't think I can do it. I don't think I can take anymore. I know God is in control, but He does not always give you the easy path. I fear mine will only get harder and harder, and I don't know if I can take anymore.
I am sorry my first post is so negative, but I just really needed to get that off my chest. I will probably get this last biopsy result tomorrow. All I can do is wait and pray.
I fought my way through Chemotherapy, a double mastectomy, and radiation. Shortly after my mastectomy I found a "rash". When it did not go away I had it biopsied and found the cancer had returned. I was devasted. As a result, they maximized my radiation and put me on an oral chemotherapy to fight it.
I had several scares after this, but they all came back negative for cancer. Yet, everytime I fear it will be the time when I hear I have it again.
I am going through another one of those times now. I have another red spot, and more splotchy red spots appearing on my chest. I am scared to death that it is cancer and that I will die from this cancer. I try to not think about it, but I can't help but break down and weep at the thought of once again going through chemotherapy, being so sick I can hardly take care of myself let alone my baby girl, and losing the hair I finally grew back.
I just don't think I can do it. I don't think I can take anymore. I know God is in control, but He does not always give you the easy path. I fear mine will only get harder and harder, and I don't know if I can take anymore.
I am sorry my first post is so negative, but I just really needed to get that off my chest. I will probably get this last biopsy result tomorrow. All I can do is wait and pray.
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