Thursday, December 9, 2010
New Medical Options
I am looking into - or rather really want go to - this clinic in GA that might really be able to help me... much better then the year my dr is giving me. The head doctor there is a christian and is willing to cut me a deal - my insurance will not cover treatment. He will charge me $3000 a week plus any supplements and tests that need to be ran (or if there are any complications)
The first course is 6 weeks ($18,000 for treatment alone)
then 6-8 weeks later I would return for 2 weeks
3 months later back again for 2 weeks
(if those 3 months went well)
then back every 3 months for a 2 week course of treatments for a year
then every 6 months for 2 years... as you can see it will be really expensive.
I have some friends who are going to try to raise funds for me and have asked me to post where people can send money
For anyone who is wanting to donate towards this you can send it to
Melanie Decker
C/O Marine Credit Union
P.O. Box 510
Waupun, WI 53963
thank you all for your prayers and help
The first course is 6 weeks ($18,000 for treatment alone)
then 6-8 weeks later I would return for 2 weeks
3 months later back again for 2 weeks
(if those 3 months went well)
then back every 3 months for a 2 week course of treatments for a year
then every 6 months for 2 years... as you can see it will be really expensive.
I have some friends who are going to try to raise funds for me and have asked me to post where people can send money
For anyone who is wanting to donate towards this you can send it to
Melanie Decker
C/O Marine Credit Union
P.O. Box 510
Waupun, WI 53963
thank you all for your prayers and help
Monday, November 29, 2010
Time Line
At my doctor appointment last Tuesday I asked my doctor why she was pushing so hard to get me into this study. She told me that she felt that it had the chance of giving me an extra 6 months... I was confused by that. I thought we were still looking at the option of cure?!? So I asked her what she meant. She told me that this study has shown improvement and up to 50% of those treated. Some had control of the disease for 6 months. I asked her what happens after the 6th month. She then told me that we would then start on another chemo (the one I'm on now) and use that for 4 to 5 months - or until it stops working on the cancer. Then we would move down the line to next chemo which would work for less time - etc....
Pretty much there is not hope for a cure now. Just trying to control the cancer as long as we can to give me the longest possible life. I asked her how long she thought that would be... she told me that before my last PET scan she thought I'd be lucky to make it to this Christmas... she thought during radiation when I could not have chemo that the cancer would spread like wildfire... But it didn't. As far as we can see it only spread to another spot in the liver and a spot on the pelvic bone. But this spreading is what makes a cure impossible. They can not control it and can not remove multiple spots. She said if she can get me into this study and give me the other chemos they have after she feels I have a year.
This was not what I was expecting... I knew I didn't have forever, but I thought I had a couple of years at least. I had no idea it could be so little. Of course my cancer may react different than others and may grow slower or may stop on the meds better.. or God may choose to perform a miracle. (However, although I am praying for the latter I am pretty sure His answer will be the same as it has throughout all of this a big fat NO.. yes I know that sounds like no faith and anger... it is anger, but I do have faith. I also am a realist. If He has said no all this time and allowed it to come back so many times that it is to the point of incurable why would he chose to change His mind now.) Who knows maybe He will. Maybe He wanted it to be more dramatic.... who can know the mind of God? Definitely not me.
My husband and I are definitely discouraged and sad and angry.... Dean more then I. He said yesterday that he feels there is no God... that obviously there is no one up there listening to him.... I know better then that. I just know that God has made no promise to heal me.... although He did say "If you ask anything in my name that will I do" I have been asking and He is not doing.... I just feel like maybe He should have clarified that more because obviously He will not do everything you ask.
I am trying to prepare for my death... more so prepare Mackenzie for a future without me. WHICH IS SO HARD! I am her mommy. She is my baby. I am supposed to be here for her intil she no longer needs me.... and she still needs me!!! I am trying to leave a piece of me with her so that she can know me. She is too young to remember me, but if I can leave her scrapbooks and videos and letters then maybe she will know her mommy and know that I loved her so much I fought to stay with her.
I also am trying not to think about dying..,. I tend to separate myself from it all and talk about it like it is someone else and not me... I don't know why I do this it just happens... but I don't think I'd be able to make it through if I didn't go into this "mode". Dean is having a very hard time. He is a negative personality to begin with so this has made him 300x's worse. He is never happy about anything and unfortunately it just makes things harder on me and Mackenzie.
Pray for Dean. He will be left behind with a toddler to take care of on his own. He will have to figure out how to juggle work and babysitter for kenzie and still take care of things around the house that need to get done.... he also likes his alone time... without me here to take care of kenzie he will have to find someone to give him that alone time. Whether it be to work in the garage or go hunting...
Pray for me... it hurts to not have the support of my husband, but I don't think he can give it to me. He is angry and hurt and feels if he is there for me it will hurt him more later. But I need him for comfort... at the sametime I understand his not wantint to be hurt more... but the middle time is difficult.
Pray for Mackenzie who knows something is wrong and is hurting along with is but does not understand why. Pray that when I pass Dean can be the daddy he needs to be for her and lover her and cherish her extra to make up for the love I can no longer give her.
Pray for a cure... maybe God will change his mind.. maybe it's just our prayers He has chosen to not answer for some reason... maybe your added prayers to our continued prayers will convince Him. Or maybe the rapture will happen and I won't have to worry about it.!!
Pray for peace and understanding for me and Dean both.
Pretty much there is not hope for a cure now. Just trying to control the cancer as long as we can to give me the longest possible life. I asked her how long she thought that would be... she told me that before my last PET scan she thought I'd be lucky to make it to this Christmas... she thought during radiation when I could not have chemo that the cancer would spread like wildfire... But it didn't. As far as we can see it only spread to another spot in the liver and a spot on the pelvic bone. But this spreading is what makes a cure impossible. They can not control it and can not remove multiple spots. She said if she can get me into this study and give me the other chemos they have after she feels I have a year.
This was not what I was expecting... I knew I didn't have forever, but I thought I had a couple of years at least. I had no idea it could be so little. Of course my cancer may react different than others and may grow slower or may stop on the meds better.. or God may choose to perform a miracle. (However, although I am praying for the latter I am pretty sure His answer will be the same as it has throughout all of this a big fat NO.. yes I know that sounds like no faith and anger... it is anger, but I do have faith. I also am a realist. If He has said no all this time and allowed it to come back so many times that it is to the point of incurable why would he chose to change His mind now.) Who knows maybe He will. Maybe He wanted it to be more dramatic.... who can know the mind of God? Definitely not me.
My husband and I are definitely discouraged and sad and angry.... Dean more then I. He said yesterday that he feels there is no God... that obviously there is no one up there listening to him.... I know better then that. I just know that God has made no promise to heal me.... although He did say "If you ask anything in my name that will I do" I have been asking and He is not doing.... I just feel like maybe He should have clarified that more because obviously He will not do everything you ask.
I am trying to prepare for my death... more so prepare Mackenzie for a future without me. WHICH IS SO HARD! I am her mommy. She is my baby. I am supposed to be here for her intil she no longer needs me.... and she still needs me!!! I am trying to leave a piece of me with her so that she can know me. She is too young to remember me, but if I can leave her scrapbooks and videos and letters then maybe she will know her mommy and know that I loved her so much I fought to stay with her.
I also am trying not to think about dying..,. I tend to separate myself from it all and talk about it like it is someone else and not me... I don't know why I do this it just happens... but I don't think I'd be able to make it through if I didn't go into this "mode". Dean is having a very hard time. He is a negative personality to begin with so this has made him 300x's worse. He is never happy about anything and unfortunately it just makes things harder on me and Mackenzie.
Pray for Dean. He will be left behind with a toddler to take care of on his own. He will have to figure out how to juggle work and babysitter for kenzie and still take care of things around the house that need to get done.... he also likes his alone time... without me here to take care of kenzie he will have to find someone to give him that alone time. Whether it be to work in the garage or go hunting...
Pray for me... it hurts to not have the support of my husband, but I don't think he can give it to me. He is angry and hurt and feels if he is there for me it will hurt him more later. But I need him for comfort... at the sametime I understand his not wantint to be hurt more... but the middle time is difficult.
Pray for Mackenzie who knows something is wrong and is hurting along with is but does not understand why. Pray that when I pass Dean can be the daddy he needs to be for her and lover her and cherish her extra to make up for the love I can no longer give her.
Pray for a cure... maybe God will change his mind.. maybe it's just our prayers He has chosen to not answer for some reason... maybe your added prayers to our continued prayers will convince Him. Or maybe the rapture will happen and I won't have to worry about it.!!
Pray for peace and understanding for me and Dean both.
Monday, November 22, 2010
What now?
I am starting chemo again tomorrow. One I've not been on - it is for cancer that has spread and is used not as a cure but to maintain the cancer and try to give me a longer life. Although my doctor said her goal is still a cure... I don't know if that is still possible but we can hope and pray.
I was supposed to be having reconstruction surgery in the next couple weeks... of course that is out with the cancer back and having just had radiation and now starting chemo. Unfortunately, it is not only postponed (again) but now it is out of the question forever. I was really looking forward to looking somewhat normal again and now I have no hope of that.
My doctor is trying to get my insurance company to cover a study (T-DM1) It is the medication I am on (which has not worked) mixed with another drug that is supposed to target the gene and take the drug directly to it and kill it. I am not really sure how i feel about the study right now. The consent form states some of the siedeffects and there were a few deaths... I am pretty sure my insurance will not cover it and if it doesn't then that takes the decision right out of my hands.
Either way I will begin chemo tomorrow. I am not willing to wait any longer and allow this cancer any extra chances at spreading more then it already has.
I was supposed to be having reconstruction surgery in the next couple weeks... of course that is out with the cancer back and having just had radiation and now starting chemo. Unfortunately, it is not only postponed (again) but now it is out of the question forever. I was really looking forward to looking somewhat normal again and now I have no hope of that.
My doctor is trying to get my insurance company to cover a study (T-DM1) It is the medication I am on (which has not worked) mixed with another drug that is supposed to target the gene and take the drug directly to it and kill it. I am not really sure how i feel about the study right now. The consent form states some of the siedeffects and there were a few deaths... I am pretty sure my insurance will not cover it and if it doesn't then that takes the decision right out of my hands.
Either way I will begin chemo tomorrow. I am not willing to wait any longer and allow this cancer any extra chances at spreading more then it already has.
Saturday, October 30, 2010
Post Radiation and the next step
I finished radiation October 20th. By then my skin was starting to break open, but I knew the worst was yet to come. Radiation continues to work in the body 7 to 10 days after the last treatment. During that time daily it gets worse. The skin continues to burn and die and peel away.
This time is much worse then last. A much larger area has broken open, and I am having to change the dressings a lot more often. It is very painful, itches, and burns. I have to wash off the silvadine cream between applications. That is excrutiating.
The doctor prescribed my sleeping pills to help me sleep, because for months now I've had a hard time sleeping. Since last year they offered me sleep aids but I refused them because I wanted to be sure to be able to hear Kenzie in the night. But we got to the point where I had to get sleep or I'd not heal.
Fortunately, the pills helped me sleep but did not knock me out so I could hear and care for Kenzie.... then the pain got so bad the pills have not affect, but hopefully it will get better soon.
My doctor wanted to get me into a drug trial, but my insurance will not cover it because it is only in stage 2. My doctor thought it was in a much later stage... Since it is not then we will begin Navulbine (chemo) along with Herceptin Friday.
This course of treatment is 2 weeks on 1 week off. So I'll be going in 2 fridays in a row then have one friday off. I am also scheduled for a PET scan and MRI of the liver on Nov 2nd. This will allow us to see if the cancer has spread in the last 7 weeks of no treatment for the cancer in the liver and lymph node.
Pray for healing, for rest, for strength, and for patience.
Thank you all for being there for me.
This time is much worse then last. A much larger area has broken open, and I am having to change the dressings a lot more often. It is very painful, itches, and burns. I have to wash off the silvadine cream between applications. That is excrutiating.
The doctor prescribed my sleeping pills to help me sleep, because for months now I've had a hard time sleeping. Since last year they offered me sleep aids but I refused them because I wanted to be sure to be able to hear Kenzie in the night. But we got to the point where I had to get sleep or I'd not heal.
Fortunately, the pills helped me sleep but did not knock me out so I could hear and care for Kenzie.... then the pain got so bad the pills have not affect, but hopefully it will get better soon.
My doctor wanted to get me into a drug trial, but my insurance will not cover it because it is only in stage 2. My doctor thought it was in a much later stage... Since it is not then we will begin Navulbine (chemo) along with Herceptin Friday.
This course of treatment is 2 weeks on 1 week off. So I'll be going in 2 fridays in a row then have one friday off. I am also scheduled for a PET scan and MRI of the liver on Nov 2nd. This will allow us to see if the cancer has spread in the last 7 weeks of no treatment for the cancer in the liver and lymph node.
Pray for healing, for rest, for strength, and for patience.
Thank you all for being there for me.
Saturday, October 23, 2010
Next Step
I have finished my 25 radiation treatments (Wednesday actually). So glad to be done, but now the worst part comes. The radiation continues to work in the body 7 to 10 days... so my skin will continue to burn off, open up, and peel away. It is very painful and frustrating.
I have cream to put on it and devised a way to keep padding in place. I also have pain medication, but try to only take it when necessary... which is becoming more consistent.
The doctor also put me on ambien. For over a year the doctor's have wanted to put me on some kind os sleep aid ( I have not been able to sleep very well ). BUT since I have a young child I did not want to take something that would make me not hear her if she needs me.... However, recently it's been much worse. I go to sleep ok but then wake up around 1 or so then can't fall asleep for at times hours... The doctor said I really need to be getting more sleep so my body can heal and fight this so.... ambien.
The first night (Wednesday) I sent Kenzie to my mom's so she'd be safe if I slept too hard to hear her. The pharmacist and doctor told me to make sure I am ready for bed before I take it, take it 30 min before wanting to go to sleep, and give myself 8 hours of sleeping time....
Any of you who know me really well, know that I never react the way other people do. A couple of instances :
Nyquil keeps me awake
Valium does not put me to sleep (not even 2 taken with 2 oxycodone)
Took the Ambien... was super tired anyway thought I'd fall asleep right away.... NOPE... Dean was snoring right in my ear and I couldn't. So I made him roll over and he was quiet long enough to fall asleep. Woke up at 2:30am... Yeah I was thinking "Are you kidding me.... sleeping pills?"
Used the restroom and fell back to sleep quickly.... better then up an hour or more... Woke up again with Dean's alarm (3:40am) but fell back to sleep right away... then woke up around 6 something then off and on till 10.
So no fear of not hearing Kenzie.. but I do feel it is allowing me to go back to sleep faster and sleep harder because I do feel more rested.
ANYWAY.... November 2nd I have a Pet scan and MRI of liver followed by an appt with my oncologist the 5th. I willstart my new chemo this day as well.
I have cream to put on it and devised a way to keep padding in place. I also have pain medication, but try to only take it when necessary... which is becoming more consistent.
The doctor also put me on ambien. For over a year the doctor's have wanted to put me on some kind os sleep aid ( I have not been able to sleep very well ). BUT since I have a young child I did not want to take something that would make me not hear her if she needs me.... However, recently it's been much worse. I go to sleep ok but then wake up around 1 or so then can't fall asleep for at times hours... The doctor said I really need to be getting more sleep so my body can heal and fight this so.... ambien.
The first night (Wednesday) I sent Kenzie to my mom's so she'd be safe if I slept too hard to hear her. The pharmacist and doctor told me to make sure I am ready for bed before I take it, take it 30 min before wanting to go to sleep, and give myself 8 hours of sleeping time....
Any of you who know me really well, know that I never react the way other people do. A couple of instances :
Nyquil keeps me awake
Valium does not put me to sleep (not even 2 taken with 2 oxycodone)
Took the Ambien... was super tired anyway thought I'd fall asleep right away.... NOPE... Dean was snoring right in my ear and I couldn't. So I made him roll over and he was quiet long enough to fall asleep. Woke up at 2:30am... Yeah I was thinking "Are you kidding me.... sleeping pills?"
Used the restroom and fell back to sleep quickly.... better then up an hour or more... Woke up again with Dean's alarm (3:40am) but fell back to sleep right away... then woke up around 6 something then off and on till 10.
So no fear of not hearing Kenzie.. but I do feel it is allowing me to go back to sleep faster and sleep harder because I do feel more rested.
ANYWAY.... November 2nd I have a Pet scan and MRI of liver followed by an appt with my oncologist the 5th. I willstart my new chemo this day as well.
Thursday, October 14, 2010
Why Me?
Since I was diagnosed many people have asked me "why you" They have told me I am such a good person and I don't deserve it. I have been asked if I have asked God "Why Me?..... my answer is NO. My response to those people were - "Why not me". You see bad things happen to good people and bad people alike, and although it seems people who choose to live a sinful life get away with everything and nothing bad every happens to them... that is not the reality. We just pay more attention to the "good" people who are afflicted with trials.
The questions I do ask God are:
"Why now?"
-why now when I am in a young marriage and have a little baby girl who needs me?
"Why can't anything ever be easy?"
-it seems that whenever something happens to me it is the most difficult thing, or hardest to fix, etc...
"Why won't He heal me?"
-I've been diagnosed with the cancer, had it come back, then have it once again come back and spread to my liver making me stage IV.
****Is it okay to question God? Of course. Jesus Himself asked God "why hast thou forsaken me" He also asked God to "take this cup from me"... even though He knew He would still have to die for our sins His human side asked God to take it from Him.
Paul asked God 3 times to take his afflication from him. And Job too asked God to heal him....
It is okay to question God, and to ask Him to heal us. However, we must remember that His answer may very well be "NO". As with Jesus and Paul. But it may be yes as with Job.
We are to pray believing that God can do it; we are to have faith that He can do it..... but we also need to not be bitter or angry if God decides to say no.
The questions I do ask God are:
"Why now?"
-why now when I am in a young marriage and have a little baby girl who needs me?
"Why can't anything ever be easy?"
-it seems that whenever something happens to me it is the most difficult thing, or hardest to fix, etc...
"Why won't He heal me?"
-I've been diagnosed with the cancer, had it come back, then have it once again come back and spread to my liver making me stage IV.
****Is it okay to question God? Of course. Jesus Himself asked God "why hast thou forsaken me" He also asked God to "take this cup from me"... even though He knew He would still have to die for our sins His human side asked God to take it from Him.
Paul asked God 3 times to take his afflication from him. And Job too asked God to heal him....
It is okay to question God, and to ask Him to heal us. However, we must remember that His answer may very well be "NO". As with Jesus and Paul. But it may be yes as with Job.
We are to pray believing that God can do it; we are to have faith that He can do it..... but we also need to not be bitter or angry if God decides to say no.
Sunday, October 10, 2010
Radiation
I have completed 17 treatments and have 8 more to go. At this point I am just tender... getting more tender everyday. It does make me tired, but thus far it is not too bad. At first the treatment itself was so painful - not because of the radiation, that I can't feel - laying on my back with my arms straight back over my head for 1 1/2 hours was excrutiating.
The nurses changed the order of how the treatments were being done to shorten it out to 1 hour, and they gave me pain medication plus a muscle relaxer. Even then the last 20 minutes were unbearable. So they started giving me a break in the middle to get up and walk around and stretch and rub the muscle that really spasms during this. That has helped a lot.
Because of the medication I am taking the doctor does not want me to drive so I have to have a driver and a babysitter everyday. Fortunately, my church has been great! They have volunteered for either one or both and have been a huge help and encouragment to me! They have also provided meals to make it easier on me when I get back from my appointment.
This treatment is being done at the UW East Clinic - which has been a help since it is only 45 min away rather then 1 1/2 hours away.
I am to have an MRI of the liver sometime in the near future to get a better look at the cancer and how big it is. This will give us a baseline. If it does not grow or spread then they can remove that portion of the liver in 6 months to a year. My oncologist also wants to do a CT scan of the lungs... which confused me so I spoke to my radiation oncologist about it, and he said we need to keep re-staging me to see where the cancer is and if it is growing or spreading... He felt I should have a full body PET scan. Which I agree. The cancer did not show on a CT scan so why would we want to do it again. He plans on talking to my oncologist and get us all on the same page.
After radiation I will begin chemotherapy. At this time I do not know exactly what we are looking at... I will know more when I have my appointment with her the beginning of November. I am guessing the scans will also determine the full course of treatment as well.
There are some long term - possible - side effects from the radiation. I might possibly have breaking down of the skin later on down road and have open sores for the rest of my life... but the benefits out way the risks.
At this point I don't have time to really stop and think about what is really going on or what could happen. I am getting up everyday, taking care of Kenzie, getting us ready for me to leave (and maybe her too) for my appointment, going to the appointment, getting dinner together, watching Kenzie, then bed. I really have not had time to think alot which is probably a good thing.
Right now I am doing what is necessary and that's all there is to it. We are also trying to do more natural things as well.. mostly teas, juicing, and lots of veggies... doing what we can is all we can do.
thank you all for your prayers.
The nurses changed the order of how the treatments were being done to shorten it out to 1 hour, and they gave me pain medication plus a muscle relaxer. Even then the last 20 minutes were unbearable. So they started giving me a break in the middle to get up and walk around and stretch and rub the muscle that really spasms during this. That has helped a lot.
Because of the medication I am taking the doctor does not want me to drive so I have to have a driver and a babysitter everyday. Fortunately, my church has been great! They have volunteered for either one or both and have been a huge help and encouragment to me! They have also provided meals to make it easier on me when I get back from my appointment.
This treatment is being done at the UW East Clinic - which has been a help since it is only 45 min away rather then 1 1/2 hours away.
I am to have an MRI of the liver sometime in the near future to get a better look at the cancer and how big it is. This will give us a baseline. If it does not grow or spread then they can remove that portion of the liver in 6 months to a year. My oncologist also wants to do a CT scan of the lungs... which confused me so I spoke to my radiation oncologist about it, and he said we need to keep re-staging me to see where the cancer is and if it is growing or spreading... He felt I should have a full body PET scan. Which I agree. The cancer did not show on a CT scan so why would we want to do it again. He plans on talking to my oncologist and get us all on the same page.
After radiation I will begin chemotherapy. At this time I do not know exactly what we are looking at... I will know more when I have my appointment with her the beginning of November. I am guessing the scans will also determine the full course of treatment as well.
There are some long term - possible - side effects from the radiation. I might possibly have breaking down of the skin later on down road and have open sores for the rest of my life... but the benefits out way the risks.
At this point I don't have time to really stop and think about what is really going on or what could happen. I am getting up everyday, taking care of Kenzie, getting us ready for me to leave (and maybe her too) for my appointment, going to the appointment, getting dinner together, watching Kenzie, then bed. I really have not had time to think alot which is probably a good thing.
Right now I am doing what is necessary and that's all there is to it. We are also trying to do more natural things as well.. mostly teas, juicing, and lots of veggies... doing what we can is all we can do.
thank you all for your prayers.
Friday, September 17, 2010
Second Radiation and Herceptin
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.
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.
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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