Well, I've managed to let another 3 months go by without updating you all. It my defense these last months have been a whirlwind of doctor appointments and hospital stays.
It all began a few days after Christmas when I get the results of my CT Scan that I'd had a few days before Christmas. I know I noted this in my last post, but I'm just refreshing your memories. My apologies if I repeat some stuff that you already know. I started radiation a week later and completed 15 treatments. The pain I was beginning to have was unbearable. It hurt to take a breath, to sneeze, pretty much doing anything hurt. Finally the pain became bad enough that my doctor admitted my to the hospital for 5 days to find out exactly what needed to happen to get this pain under control. At this point, I only had 2 radiation treatments left. I was actually transported each time by ambulance to make sure they were completed. We got the pain under control and I was sent home on a Friday. Unfortunately I was sent home with a different kind of pain medication, severe dizziness an)d was back in the hospital on Monday with the fear that something might be going on in my brain. Being in the hospital is exhausting!!!! I seriously had the BEST nurses!
So now we're in February. I have the new port installed the Thursday after I was discharged the second time. Then I started my new chemo plan that following Monday. Apparently most people do OK with the chemo in terms of nausea and other stupid side effects.....but not me. It seems like every side effect, I got. It sucked. So we did a couple rounds of that one and I noticed that I was starting to have some pretty bad paid again. My doctor is on top of it and ordered a CT scan ASAP. Well we found out last week that the chemo wasn't working and the radiation wasn't working either. This tumor is so aggressive and it's sneaky. Basically everything is growing and there are new lesions, including one small one on my liver. The sternum lesion is growing and so is the one on my lungs plus there are new ones on my lungs. So, I have to start another chemo plan. Thank goodness I have a long list to work off of. But we're pulling out the big guns this time. So I started a new one yesterday. It's called Clarotropin and Taxotere. Unfortunately, they will make my hair fall out. Dammit, and I was just getting used to having different hairstyles!!! This regimen with my 3 weeks on, one week off. It's gonna be rough. My doctor even suggested that I quit my job -- that there'd be no way I could work with this treatment. So I did.
Anyway, that's my update for now. Sorry, if this is all jumbled and doesn't flow, but I'm still under the effects from yesterday. Please feel free to ask any questions on FB and I will do my best to answer them on FB. We'll still trying to shield the kids as best we can when it comes to talking about it.
The Butler Family
Friday, March 29, 2013
Friday, December 28, 2012
Seriously????........ Well, shit!
Those were the first words out of my mouth yesterday when I saw my doctor to review the results of my CT scan last Friday. There really is no way to sugar coat this, so I won't, but I will warn you...if you are offended by swearing, don't read this post. I will do my best to tone it down, but I'm beyond pissed off, frustrated and sad!!!! So bear with me.
My scan showed "significant progression" in my lungs and internal mammory node and I need to change my treatment plan. ARE YOU FUCKING KIDDING ME??????? Come on! I was doing so good and I was feeling really good. The blisters on my hands and feet had gotten better. What do you mean I have to change treatment plans?! I don't want to!!!! The tears began to flow ..... and flow ...... and I don't remember much after that. My doctor talked mostly with Bobby while I stared at the wall and cried.... and cried ...... and cried some more. This is just fucking ridiculous!! SHIT! SHIT! SHIT!!!!!!!! (Don't judge me, I'm mad)
I had my port removed last year, kind of like the grand finale, when I had my boobs finished. It was very momentous. The plan was to plant it under a rose bush, but that never happened. It's still sitting on my dresser in a sterile container. Now, I have to get another one put in....probably next week because the chemo isn't IV friendly. The pain that these tumors are causing in the bone are getting worse and beginning to affect my daily life. That's where some of the urgency to shrink it faster comes in to play. I have to see a Radiation Oncologist to see if they will even do radiation considering how close this bitch is to my heart. No sense in doing radiation if it's going to destroy the valves around my heart. So I have to see what they say. Doing radiation on my lung is not an option because then I won't be able to breath. Removing the mammory node isn't an option because it's too close to my heart and removing the tumors on my lung are too risky and removing the one erroding into the sternum isn't an option because, well, that's what holds me together :) Last month, my CT scan showed that the part that was erroding into my sternum showed a small decrease in size and necrosis, that is still there, but the mammory node is attached and that's what is growing at lighting speed. I had two nodules on my lungs last month, but this month they have almost doubled in size and there are more. See why I'm pissed?! So chemo isn't working, at least the one I'm taking. So if I can do radiation, I will do radiation first and then chemo. If I can't do radiation, I'll go straight to chemo ... either way something will happen within the next few weeks.
After I left the doctor yesterday, I had one plan -- to get through the day. We sat in the parking lot for about 20 minutes and just cried. Other than the swearing, I was pretty speechless. I dropped the "F" bomb a lot. I didn't go to work, Bobby didn't go back to work, my kids went to my parents house for the night -- then Bobby and I went to get a beer. I had to occupy my mind with something and the first thing that came to my mind was a beer, an ice cold beer. I got through the day one minute at a time, just to wake up today and realize my new reality. I'm getting pretty tired of my new reality becoming a newer and different reality. Why can't I just have my old life back? Why can't I just be guaranteed that if I fight with everything I have that I'll make it to see my kids graduate from college?! WHY THE HELL NOT???????? I often wonder if I hopped a plane to Australia, that I'd get there and wouldn't have cancer anymore. If I could just get out of here, I could leave all the rest behind me! I just want to run away. But I can't, even if I wanted to. All I can think about is Cooper, Shelby and Bobby. Cooper. Shelby. Bobby. What would they do without me? I don't want this to be their life....their story. But it is. Whether I like it or not. Truth is....none of us really know how long we are going to be here on earth. I told my doctor last month that I just wish I knew when I was going to die. She looked straight at me and said "if you knew, what would it change?" Well, I suppose nothing. So I guess I have only one option....we find a treatment that works, fight like hell, I survive and then I THRIVE. I do believe in the gift of eternal life, but I'm very happy with this one and I'm not ready to go yet.
I'm hesitant to toast in the New Year because I don't know what I'd really be toasting to, but time doesn't stop .... for anyone. Last year, when we toasted in 2012 and told 2011 to kiss our sweet asses, we had no idea what we were in for this year. In spite of all my swear words and fears, this year has blessed us in many ways and I know that all blessings come in different shapes, sizes and colors.... sometimes they just aren't very clear. I'm excited and apprenhensive to ring in the New Year, but I guess it's GO BIG OR GO HOME in this house!!!
My scan showed "significant progression" in my lungs and internal mammory node and I need to change my treatment plan. ARE YOU FUCKING KIDDING ME??????? Come on! I was doing so good and I was feeling really good. The blisters on my hands and feet had gotten better. What do you mean I have to change treatment plans?! I don't want to!!!! The tears began to flow ..... and flow ...... and I don't remember much after that. My doctor talked mostly with Bobby while I stared at the wall and cried.... and cried ...... and cried some more. This is just fucking ridiculous!! SHIT! SHIT! SHIT!!!!!!!! (Don't judge me, I'm mad)
I had my port removed last year, kind of like the grand finale, when I had my boobs finished. It was very momentous. The plan was to plant it under a rose bush, but that never happened. It's still sitting on my dresser in a sterile container. Now, I have to get another one put in....probably next week because the chemo isn't IV friendly. The pain that these tumors are causing in the bone are getting worse and beginning to affect my daily life. That's where some of the urgency to shrink it faster comes in to play. I have to see a Radiation Oncologist to see if they will even do radiation considering how close this bitch is to my heart. No sense in doing radiation if it's going to destroy the valves around my heart. So I have to see what they say. Doing radiation on my lung is not an option because then I won't be able to breath. Removing the mammory node isn't an option because it's too close to my heart and removing the tumors on my lung are too risky and removing the one erroding into the sternum isn't an option because, well, that's what holds me together :) Last month, my CT scan showed that the part that was erroding into my sternum showed a small decrease in size and necrosis, that is still there, but the mammory node is attached and that's what is growing at lighting speed. I had two nodules on my lungs last month, but this month they have almost doubled in size and there are more. See why I'm pissed?! So chemo isn't working, at least the one I'm taking. So if I can do radiation, I will do radiation first and then chemo. If I can't do radiation, I'll go straight to chemo ... either way something will happen within the next few weeks.
After I left the doctor yesterday, I had one plan -- to get through the day. We sat in the parking lot for about 20 minutes and just cried. Other than the swearing, I was pretty speechless. I dropped the "F" bomb a lot. I didn't go to work, Bobby didn't go back to work, my kids went to my parents house for the night -- then Bobby and I went to get a beer. I had to occupy my mind with something and the first thing that came to my mind was a beer, an ice cold beer. I got through the day one minute at a time, just to wake up today and realize my new reality. I'm getting pretty tired of my new reality becoming a newer and different reality. Why can't I just have my old life back? Why can't I just be guaranteed that if I fight with everything I have that I'll make it to see my kids graduate from college?! WHY THE HELL NOT???????? I often wonder if I hopped a plane to Australia, that I'd get there and wouldn't have cancer anymore. If I could just get out of here, I could leave all the rest behind me! I just want to run away. But I can't, even if I wanted to. All I can think about is Cooper, Shelby and Bobby. Cooper. Shelby. Bobby. What would they do without me? I don't want this to be their life....their story. But it is. Whether I like it or not. Truth is....none of us really know how long we are going to be here on earth. I told my doctor last month that I just wish I knew when I was going to die. She looked straight at me and said "if you knew, what would it change?" Well, I suppose nothing. So I guess I have only one option....we find a treatment that works, fight like hell, I survive and then I THRIVE. I do believe in the gift of eternal life, but I'm very happy with this one and I'm not ready to go yet.
I'm hesitant to toast in the New Year because I don't know what I'd really be toasting to, but time doesn't stop .... for anyone. Last year, when we toasted in 2012 and told 2011 to kiss our sweet asses, we had no idea what we were in for this year. In spite of all my swear words and fears, this year has blessed us in many ways and I know that all blessings come in different shapes, sizes and colors.... sometimes they just aren't very clear. I'm excited and apprenhensive to ring in the New Year, but I guess it's GO BIG OR GO HOME in this house!!!
Tuesday, October 30, 2012
Update...
I can't believe how fast the time is going by. It's already the end of October?!?!?! Before we know it, we will be putting up Christmas decorations getting ready for the holidays!
Our trip to Hawaii was A-M-A-Z-I-N-G to say the least. It exceeded every expectation that I had. The time that we got to spend together was perfect, despite a few incident's with hot coffee and a sunburn. :) The kids got to swim with the dolphins and that was an experience that they will never forget. At 3 am on the morning we arrived a baby dolphin was born. Even though the kids couldn't touch it they were able to get with in just a few feet from it - what an experience! Bobby and I sat on the side lines and took in every smile and giggle. The kids even learned a few hand signals to get them to do some tricks. Truly awesome! The mai tai's were out of this world! I could have sat by the pool the ENTIRE time sipping a mai tai and I would have been just fine! :) One of my truest and best friends EVER called ahead (he has connections) and upgraded our room to an ocean front view. We could open our sliding glass door every morning to hear and watch the waves. I can't wait to go back!! These are just a few of the pictures ... :)
At the luau...
One happy familia!
The jet lag after we got home was awful!!! It took a few days to recuperate. I was scheduled for a CT the Tuesday after we got back from our trip to measure exactly how big my tumor was for monitoring purposes. I got a call the following day that it had grown by half a centimeter within the last month and I needed to start chemo ASAP. So, instead of waiting till Monday, Oct 8th, I started on Thursday, October 4th. Stupid cancer! So my schedule is two weeks on, one week off for 3 cycles. One of the many side effects of both medications is blisters on my feet and hands. Sounds fairly doable, right?! NOT!!! OMG! I got blisters so bad I could barely walk. They had me stop both medications 2 days before I was supposed to stop because they were so bad. I can't wear shoes. I've started collecting fuzzy slippers since I wear them every day!! Target has some really cute ones! :) I met with my doctor last Thursday to get started again. They lowered my dose and I started Thursday night, so I'm on day 5 of my second cycle. Other than being super tired....all the damn time....it seems, that so far, I'm doing OK. Right now, I just take one day at a time...sometimes one hour at a time.
Our trip to Hawaii was A-M-A-Z-I-N-G to say the least. It exceeded every expectation that I had. The time that we got to spend together was perfect, despite a few incident's with hot coffee and a sunburn. :) The kids got to swim with the dolphins and that was an experience that they will never forget. At 3 am on the morning we arrived a baby dolphin was born. Even though the kids couldn't touch it they were able to get with in just a few feet from it - what an experience! Bobby and I sat on the side lines and took in every smile and giggle. The kids even learned a few hand signals to get them to do some tricks. Truly awesome! The mai tai's were out of this world! I could have sat by the pool the ENTIRE time sipping a mai tai and I would have been just fine! :) One of my truest and best friends EVER called ahead (he has connections) and upgraded our room to an ocean front view. We could open our sliding glass door every morning to hear and watch the waves. I can't wait to go back!! These are just a few of the pictures ... :)
At the luau...
This was the view from our balcony! Amazeballs!!!
Look how close the ocean was! And the pool right below? Seriously!
Drinks, oceanside :)
One happy familia!
The jet lag after we got home was awful!!! It took a few days to recuperate. I was scheduled for a CT the Tuesday after we got back from our trip to measure exactly how big my tumor was for monitoring purposes. I got a call the following day that it had grown by half a centimeter within the last month and I needed to start chemo ASAP. So, instead of waiting till Monday, Oct 8th, I started on Thursday, October 4th. Stupid cancer! So my schedule is two weeks on, one week off for 3 cycles. One of the many side effects of both medications is blisters on my feet and hands. Sounds fairly doable, right?! NOT!!! OMG! I got blisters so bad I could barely walk. They had me stop both medications 2 days before I was supposed to stop because they were so bad. I can't wear shoes. I've started collecting fuzzy slippers since I wear them every day!! Target has some really cute ones! :) I met with my doctor last Thursday to get started again. They lowered my dose and I started Thursday night, so I'm on day 5 of my second cycle. Other than being super tired....all the damn time....it seems, that so far, I'm doing OK. Right now, I just take one day at a time...sometimes one hour at a time.
Friday, September 21, 2012
Cancer sucks!
Well, I have absolutely dreaded this post.... I'm not really sure why. Maybe because once I post it, my new life becomes more of a reality. I've been grieving my old life for the past few weeks and it's taking a little longer than I expected it to. I just read my last blog post and it was in September 2011 and I was so excited because my last and final chemo treatment was right around the corner. Never in a million years did I think my life would take such a drastic turn! So let me bring you all up to date. Some of this information might be old news to you and some might be brand new. So get your coffee, Diet Dr Pepper or wine, this will be a bit long. Here it goes....
At the beginning of the summer, at one of my many routine check ups, my surgeon noticed a small lump in my left breast. She felt sure it was nothing more than a fluid filled cyst, but told me to come back in August just to make sure it hadn't grown or changed. A few weeks before my follow up visit in August, I sneezed and I felt like something has stabbed me in my left breast. It was really weird, but ended up going away after a few days. A few days after that, I developed the same kind of pain in my right breast, then after a few days it migrated to the center of my chest and just hung out there. I mentioned this to my surgeon when I saw her and she thought the that even though the lump hadn't grown at all, since I was having this new pain the "reasonable thing to do" would be to get an MRI. So I had an MRI a week later and about 4 hours after the MRI all hell broke loose. I wasn't supposed to get the results for 3 days and they called me that afternoon! I get the call and the angel of a nurse on the other end of the phone, Alice, asked me if I was in a place I could talk; i.e. not around my kids or driving. My heart sunk and I could feel the blood drain from my face. This couldn't be good. She told me that the MRI revealed an eroding mass in my sternum and 2 lesions on my lungs consistent with metastasis. I will spare you all the exact words I used, but it went a little something like "YOU ARE FREAKING KIDDING ME!" It was awful. I was in no way prepared for this. For goodness sake, I hadn't even told my parents about any of this because I was sure I'd pulled a muscle and that's what was causing the pain and the lump was just a fluid filled cyst. I was on my way to pick up the kids from school, so I had to pull myself together. The first thing we had to do was schedule a biopsy, PET scan and a bone scan. My phone rang all afternoon with people confirming these appointments. I hung up with my nurse at one point and just put my head down and cried -- I could no longer hold it together. Shelby came in and asked me what was wrong. When I looked at her face, in her eyes, I knew I had to tell her the truth. You know what she said to me? .... "We can get through this mom" .... So as if I wasn't crying hard enough.... Cooper heard the commotion and came to see what was going on. I told him the same thing I told Shelby and he instantly went pale and asked me "are you going to die?" --- I grabbed him and hugged him and, of course, told him NO, that at this point we weren't even positive that it was cancer and that even if it was, the doctors could fix me. He was perfectly acceptable of that answer and went back to his lego building. All of this happened on Friday, August 17th. Fast forward to Monday, the 20th -- I had my PET scan. Then Tuesday, the 21st my bone scan, then Tuesday the 28th my biopsy. By Tuesday evening, I had my diagnosis ... Metastatic Adenocarcinoma with a Breast Primary.... meaning breast cancer in my sternum bone. At this point, the lesions on my lungs can only be monitored because they are so small. We met with my oncologist on Friday, the 31st to come up with a game plan. Most of the appointment is a blur. She did a lot of talking, Bobby asked a lot of questions and tried to write down her answers. I was getting a really weird feeling -- the doctor kept saying "we'll try one chemo and get you a little bit more time" and when the tumor starts to grow again "we'll try another chemo to get your a bit more time". I was very confused. What the hell did she mean by a "bit more time"??!!!!! So I came right out and said to her, "you can cure this, right?" and she shook her head. WHAT DO YOU MEAN YOU CAN'T FIX THIS!!?!?!! WE DIDN'T GO THROUGH WHAT WE WENT THROUGH LAST YEAR TO BE BACK IN THIS BOAT AGAIN (less than a year later) AND YOU TELL ME YOU CAN FIX THIS!!! YOU HAVE TO FIX IT!! YOU HAVE TO!!!!!! Once again, Bobby or I were NOT prepared for this. I lost it. I totally lost it. I began to cry. Bobby began to cry. Then I began to cry harder. The doctor stepped out -- apparently I was making her uncomfortable. Next, in comes a nurse with a cup of water and tells me to calm down. I seriously wanted to punch her in her face. Bobby nicely asked her to leave us alone. We left the doctors office about 15 minutes later with no hope....defeated. We'd fought and lost. It was just a matter of time now. The rest of the day was spent crying.... a lot. We were absolutely hopeless, but knew we were foolish if we didn't get a second opinion. My mom started making phone calls. We have a family friend who is a very well known breast cancer nurse at the UNM Cancer Center. My mom called her and told her our situation. It just so happened that she was going to a retreat with 2 of the breast cancer doctors that weekend. She would talk to them and get back to us. She called on Tuesday, Sept 4th and told me I had an appt the next day at 12:30 with an incredible doctor, Dr. Dayao. It was the docs day off, but she came in to see me. She spent over 2 hours with me. The nurse, Ann, never left the room. The listened, they cried with me, they gave us hope ... the level of compassion from these women was unbelievable. She had a pretty concrete game plan worked out but wanted to present my case to the tumor board that afternoon and she would call me. Just like she said she would, she called me that evening. The tumor board didn't really have much more to offer, just a few details that I don't need to go into. In a nutshell, my treatment plan for now is this....
1. The cancer is deemed incurable. At this point, we treat it and control it. Fine! Whatever!!!
2. I don't have to do radiation, at least not right now. Super!
3. I will start an oral chemo probably on October 8th. Hopefully, the side effects will be minimal.
4. I qualify to participate in a clinical trial. That means I will take another chemo orally that is normally used to treat kidney cancer. It has been proven to kill certain types of breast cancer cells. There is no magic test to find out if I have those types of breast cancer cells, but we'll attack and hopefully they'll die :) The clinical trial is pretty interesting to say the least. There are less then 300 people in the U.S. on it right now. The one part that I don't really like, is that part of being on a clinical trial, you could potentially receive the placebo (fake pill) and no one knows except for the doctor in Brazil that is directing this. So we won't ever know if I'm getting the real stuff or not, not even my doctor. The other thing about a clinical trial is they monitor me like a hawk, which I kind of like :)
5. I'll have a PET scan roughly every 3 months to monitor "things"
I feel it pretty safe to say that I'm very angry right now. I'm grieving my old life and that is really hard. The harder part is accepting my new life. I don't want cancer. I don't want it to be part of my life. I don't want it to be part of my families life. How fair is it that my parents, my family, my husband, my children and my friends have to sit idly by and watch this happen. This is not how I wanted it. I don't want my kids to look back on their child hood and only remember cancer. I can't stomp my feet and throw a fit and make it go away. I've prayed and prayed, so I'm have a hard time understanding why this happened to me. My unwavering faith is definitely wavering and that makes me sad, I don't even like saying it. I know it will pass, but right now I'm just pissed. The sad reality is that I have cancer, it will not go away, it might get better, it might not, I might die in 2 years or 5 years or 20 years, or God willing 50 years! The fear of the unknown is crippling to say the least. Wine always fixings things for me and it can't fix this....
On a happier note.... the 4 of us leave at the butt crack of dawn on Sunday morning for paradise. We will spend a relaxing week in Hawaii with not a care in the world. This was supposed to me my cancer free celebration, so now we'll just have to celebrate....celebrate life I suppose, because today, as pissed off at my situation as I am, I still have my beautiful children and unconditionally loving family and friends.
At the beginning of the summer, at one of my many routine check ups, my surgeon noticed a small lump in my left breast. She felt sure it was nothing more than a fluid filled cyst, but told me to come back in August just to make sure it hadn't grown or changed. A few weeks before my follow up visit in August, I sneezed and I felt like something has stabbed me in my left breast. It was really weird, but ended up going away after a few days. A few days after that, I developed the same kind of pain in my right breast, then after a few days it migrated to the center of my chest and just hung out there. I mentioned this to my surgeon when I saw her and she thought the that even though the lump hadn't grown at all, since I was having this new pain the "reasonable thing to do" would be to get an MRI. So I had an MRI a week later and about 4 hours after the MRI all hell broke loose. I wasn't supposed to get the results for 3 days and they called me that afternoon! I get the call and the angel of a nurse on the other end of the phone, Alice, asked me if I was in a place I could talk; i.e. not around my kids or driving. My heart sunk and I could feel the blood drain from my face. This couldn't be good. She told me that the MRI revealed an eroding mass in my sternum and 2 lesions on my lungs consistent with metastasis. I will spare you all the exact words I used, but it went a little something like "YOU ARE FREAKING KIDDING ME!" It was awful. I was in no way prepared for this. For goodness sake, I hadn't even told my parents about any of this because I was sure I'd pulled a muscle and that's what was causing the pain and the lump was just a fluid filled cyst. I was on my way to pick up the kids from school, so I had to pull myself together. The first thing we had to do was schedule a biopsy, PET scan and a bone scan. My phone rang all afternoon with people confirming these appointments. I hung up with my nurse at one point and just put my head down and cried -- I could no longer hold it together. Shelby came in and asked me what was wrong. When I looked at her face, in her eyes, I knew I had to tell her the truth. You know what she said to me? .... "We can get through this mom" .... So as if I wasn't crying hard enough.... Cooper heard the commotion and came to see what was going on. I told him the same thing I told Shelby and he instantly went pale and asked me "are you going to die?" --- I grabbed him and hugged him and, of course, told him NO, that at this point we weren't even positive that it was cancer and that even if it was, the doctors could fix me. He was perfectly acceptable of that answer and went back to his lego building. All of this happened on Friday, August 17th. Fast forward to Monday, the 20th -- I had my PET scan. Then Tuesday, the 21st my bone scan, then Tuesday the 28th my biopsy. By Tuesday evening, I had my diagnosis ... Metastatic Adenocarcinoma with a Breast Primary.... meaning breast cancer in my sternum bone. At this point, the lesions on my lungs can only be monitored because they are so small. We met with my oncologist on Friday, the 31st to come up with a game plan. Most of the appointment is a blur. She did a lot of talking, Bobby asked a lot of questions and tried to write down her answers. I was getting a really weird feeling -- the doctor kept saying "we'll try one chemo and get you a little bit more time" and when the tumor starts to grow again "we'll try another chemo to get your a bit more time". I was very confused. What the hell did she mean by a "bit more time"??!!!!! So I came right out and said to her, "you can cure this, right?" and she shook her head. WHAT DO YOU MEAN YOU CAN'T FIX THIS!!?!?!! WE DIDN'T GO THROUGH WHAT WE WENT THROUGH LAST YEAR TO BE BACK IN THIS BOAT AGAIN (less than a year later) AND YOU TELL ME YOU CAN FIX THIS!!! YOU HAVE TO FIX IT!! YOU HAVE TO!!!!!! Once again, Bobby or I were NOT prepared for this. I lost it. I totally lost it. I began to cry. Bobby began to cry. Then I began to cry harder. The doctor stepped out -- apparently I was making her uncomfortable. Next, in comes a nurse with a cup of water and tells me to calm down. I seriously wanted to punch her in her face. Bobby nicely asked her to leave us alone. We left the doctors office about 15 minutes later with no hope....defeated. We'd fought and lost. It was just a matter of time now. The rest of the day was spent crying.... a lot. We were absolutely hopeless, but knew we were foolish if we didn't get a second opinion. My mom started making phone calls. We have a family friend who is a very well known breast cancer nurse at the UNM Cancer Center. My mom called her and told her our situation. It just so happened that she was going to a retreat with 2 of the breast cancer doctors that weekend. She would talk to them and get back to us. She called on Tuesday, Sept 4th and told me I had an appt the next day at 12:30 with an incredible doctor, Dr. Dayao. It was the docs day off, but she came in to see me. She spent over 2 hours with me. The nurse, Ann, never left the room. The listened, they cried with me, they gave us hope ... the level of compassion from these women was unbelievable. She had a pretty concrete game plan worked out but wanted to present my case to the tumor board that afternoon and she would call me. Just like she said she would, she called me that evening. The tumor board didn't really have much more to offer, just a few details that I don't need to go into. In a nutshell, my treatment plan for now is this....
1. The cancer is deemed incurable. At this point, we treat it and control it. Fine! Whatever!!!
2. I don't have to do radiation, at least not right now. Super!
3. I will start an oral chemo probably on October 8th. Hopefully, the side effects will be minimal.
4. I qualify to participate in a clinical trial. That means I will take another chemo orally that is normally used to treat kidney cancer. It has been proven to kill certain types of breast cancer cells. There is no magic test to find out if I have those types of breast cancer cells, but we'll attack and hopefully they'll die :) The clinical trial is pretty interesting to say the least. There are less then 300 people in the U.S. on it right now. The one part that I don't really like, is that part of being on a clinical trial, you could potentially receive the placebo (fake pill) and no one knows except for the doctor in Brazil that is directing this. So we won't ever know if I'm getting the real stuff or not, not even my doctor. The other thing about a clinical trial is they monitor me like a hawk, which I kind of like :)
5. I'll have a PET scan roughly every 3 months to monitor "things"
I feel it pretty safe to say that I'm very angry right now. I'm grieving my old life and that is really hard. The harder part is accepting my new life. I don't want cancer. I don't want it to be part of my life. I don't want it to be part of my families life. How fair is it that my parents, my family, my husband, my children and my friends have to sit idly by and watch this happen. This is not how I wanted it. I don't want my kids to look back on their child hood and only remember cancer. I can't stomp my feet and throw a fit and make it go away. I've prayed and prayed, so I'm have a hard time understanding why this happened to me. My unwavering faith is definitely wavering and that makes me sad, I don't even like saying it. I know it will pass, but right now I'm just pissed. The sad reality is that I have cancer, it will not go away, it might get better, it might not, I might die in 2 years or 5 years or 20 years, or God willing 50 years! The fear of the unknown is crippling to say the least. Wine always fixings things for me and it can't fix this....
On a happier note.... the 4 of us leave at the butt crack of dawn on Sunday morning for paradise. We will spend a relaxing week in Hawaii with not a care in the world. This was supposed to me my cancer free celebration, so now we'll just have to celebrate....celebrate life I suppose, because today, as pissed off at my situation as I am, I still have my beautiful children and unconditionally loving family and friends.
Thursday, September 1, 2011
The end is near....
WOW! I can't believe it's been almost 2 months since my last post! That just shows how much of a blur the summer was for me.
I'm nearing the end of my treatments - I'm finally able to see the light at the end of the tunnel, only 2 more treatments to go. Honestly, I can't believe it. I truly never thought I'd get here. I thought I was going to die first.....and not from the cancer, but from the chemo. Bobby put it perfectly -- they try to kill you without actually killing you. I was so incredibly sick and unable to function that I would find myself so deeply depressed. There were days that Bobby and/or my mom would have to physically force me to get out of bed. I felt like I was in an abyss, a deep dark abyss and I saw no way out. I hated the way I looked, so I never wanted to leave the house or see my friends. The doctor wanted to put me on an anti-depressant, but it couldn't be mixed with my anti-nausea meds. At chemo I would get 4 different anti-nausea meds and then at home I had 4 different prescriptions of anti-nausea meds to take. I was still sick. I don't know how much all those meds actually helped, but I'd hate to see how much worse it would have been without them! BUT! -- those days are over! I started the new treatments and they are so much better! Life is slowly, but surely, getting back to normal. I'm able to function as a full time wife and mom, which is something I missed so much. I'm sure that was part of my sadness -- I wasn't able to be present for my family. The kids missed "mommy" so much and I missed them. They saw me go thru things that no child should ever have to watch their mommy go thru. It was only a few months, but it felt like an eternity. Now, laughter and smiles are back baby!!! I still cry a lot, but it's not because I'm sad, it's because I'm menopausal. Yes, you read that right. I now have a whole new respect for women that experience hot flashes....holy crap! As if 100 degree summer days weren't quite enough, I've been blessed with hot flashes to go with it. I had a hysterectomy about 5 years ago, but I got to keep one ovary so that I wouldn't have to deal with hormone replacement. Well, the chemo has basically fried my poor little ovary. Only time will tell if it's able to "come back to life" or if it will remain dead :( The doctor says the further away from menopause age, the better chance I have of the ovary coming back. So I'm hoping for the best, cause hot flashes suck and I'm sure people are tired of me crying for no reason :) .... I must have said 50 times in the last week "I'm not crying because I'm sad, I don't know why I'm crying!" For example, I'm crying right now -- probably because I'm talking about crying, but I don't really know! And....this is the 3rd time I've cried since I started writing this post 30 minutes ago. I keep telling myself I'm not crazy!
My hair started to grow back, but that quickly came to a halt - not sure why, but oh well. My head looks like Shelby's did when she was born. Not only did my hair quit growing, but my eyebrows and eyelashes fell out. I remember saying that I couldn't wait until I could eat what I wanted, when I wanted and to follow it up with a yummy beer (or a glass of wine). I'm happy to report that I CAN NOW!!! Unfortunately, the scale can confirm that I've been eating whatever I want, too! I've also incorporated green chile back into my diet - YESSSS!!!!!!! I can't get enough of it! Everything seems like it's coming together perfectly. Today is the first day of September which means fall is right around the corner, the State Fair is coming soon and I can already smell the deep fried butter and oreos, Balloon Fiesta is in a month and hopefully not to far after that I can have my final surgery to get my new boobs....probably the end of October. I can't wait to toast in 2012 and tell 2011 to kiss my ass!
My next blog will be titled "NO MORE CHEMO!" Maybe I'll add music - I'm thinking "I'm A Survivor" by Destiny's Child. I have my 3rd one tomorrow and the last one in 2 weeks. TWO WEEKS PEOPLE!!!!! Can you believe it????? So until next time.... remember that every day is precious - hug the ones you love and smile till it hurts. And to all the ladies, I know you're probably tired of hearing it, but if you haven't done a self exam recently, you probably should.
I'm nearing the end of my treatments - I'm finally able to see the light at the end of the tunnel, only 2 more treatments to go. Honestly, I can't believe it. I truly never thought I'd get here. I thought I was going to die first.....and not from the cancer, but from the chemo. Bobby put it perfectly -- they try to kill you without actually killing you. I was so incredibly sick and unable to function that I would find myself so deeply depressed. There were days that Bobby and/or my mom would have to physically force me to get out of bed. I felt like I was in an abyss, a deep dark abyss and I saw no way out. I hated the way I looked, so I never wanted to leave the house or see my friends. The doctor wanted to put me on an anti-depressant, but it couldn't be mixed with my anti-nausea meds. At chemo I would get 4 different anti-nausea meds and then at home I had 4 different prescriptions of anti-nausea meds to take. I was still sick. I don't know how much all those meds actually helped, but I'd hate to see how much worse it would have been without them! BUT! -- those days are over! I started the new treatments and they are so much better! Life is slowly, but surely, getting back to normal. I'm able to function as a full time wife and mom, which is something I missed so much. I'm sure that was part of my sadness -- I wasn't able to be present for my family. The kids missed "mommy" so much and I missed them. They saw me go thru things that no child should ever have to watch their mommy go thru. It was only a few months, but it felt like an eternity. Now, laughter and smiles are back baby!!! I still cry a lot, but it's not because I'm sad, it's because I'm menopausal. Yes, you read that right. I now have a whole new respect for women that experience hot flashes....holy crap! As if 100 degree summer days weren't quite enough, I've been blessed with hot flashes to go with it. I had a hysterectomy about 5 years ago, but I got to keep one ovary so that I wouldn't have to deal with hormone replacement. Well, the chemo has basically fried my poor little ovary. Only time will tell if it's able to "come back to life" or if it will remain dead :( The doctor says the further away from menopause age, the better chance I have of the ovary coming back. So I'm hoping for the best, cause hot flashes suck and I'm sure people are tired of me crying for no reason :) .... I must have said 50 times in the last week "I'm not crying because I'm sad, I don't know why I'm crying!" For example, I'm crying right now -- probably because I'm talking about crying, but I don't really know! And....this is the 3rd time I've cried since I started writing this post 30 minutes ago. I keep telling myself I'm not crazy!
My hair started to grow back, but that quickly came to a halt - not sure why, but oh well. My head looks like Shelby's did when she was born. Not only did my hair quit growing, but my eyebrows and eyelashes fell out. I remember saying that I couldn't wait until I could eat what I wanted, when I wanted and to follow it up with a yummy beer (or a glass of wine). I'm happy to report that I CAN NOW!!! Unfortunately, the scale can confirm that I've been eating whatever I want, too! I've also incorporated green chile back into my diet - YESSSS!!!!!!! I can't get enough of it! Everything seems like it's coming together perfectly. Today is the first day of September which means fall is right around the corner, the State Fair is coming soon and I can already smell the deep fried butter and oreos, Balloon Fiesta is in a month and hopefully not to far after that I can have my final surgery to get my new boobs....probably the end of October. I can't wait to toast in 2012 and tell 2011 to kiss my ass!
My next blog will be titled "NO MORE CHEMO!" Maybe I'll add music - I'm thinking "I'm A Survivor" by Destiny's Child. I have my 3rd one tomorrow and the last one in 2 weeks. TWO WEEKS PEOPLE!!!!! Can you believe it????? So until next time.... remember that every day is precious - hug the ones you love and smile till it hurts. And to all the ladies, I know you're probably tired of hearing it, but if you haven't done a self exam recently, you probably should.
Wednesday, July 6, 2011
They call it the happiest place on earth for a reason!
Hi everyone! I know I haven't written in a while, but today is a good day - so here I am!!
Our trip to Disneyland was absolutely magical! It completely exceeded any and all expectations that I had. I was so worried that I wouldn't feel well enough to enjoy our time there, but it's amazing what one can do with a positive attitude (and a wheelchair). Watching Shelby and Cooper's eyes dance with excitement made my heart so happy! We developed a great routine right from the start - get up early and go to the park, head back to the hotel around 2:00 for swimming, then dinner, then to the room for some rest. I couldn't get in the pool, but I could certainly enjoy the music and my non-alcoholic daquiri while I laid back in the shade and watched. I love to people watch - and a hotel pool in southern CA is a great place to do that! I don't know what I would have done without Bobby. He put his heart and soul into making this trip possible. He pushed me around Disneyland in a wheelchair, which proved to be challenging at times with the big crowds, and never once crashed, complained or took out the people in front of us. We seriously couldn't wipe the smiles off our faces all week. It was great to get away from everything and just enjoy being a family and laugh till it hurt. Then it was back to reality...
My last chemo treatment was awful. AWFUL!!! It hit me like a mack truck. I got so sick and the fatigue was debilitating. Trying to stay upbeat and positive was impossible. My positive attitude was out the door and nothing was right in my world. I cried and cried and cried some more and then when I thought I was all out of tears, I'd cry even more. I couldn't believe what was happening to me. If I haven't said it lately...I HATE CANCER!!!! I'm so over it. We were supposed to go to Colorado over the 4th of July weekend and I couldn't go - I was too sick. So, we made the decision to let the kids go with my parents. I had never been away from my kids for that long (5 days) and this was a trip we were supposed to take together, but the cards just didn't get dealt that way this time. The kids had the best time and, once again, were able to laugh till it hurt and not worry about me. By Sunday, I was starting to feel better and getting back to what I call normal these days and the kids came home Tuesday. Bobby and I actually even went on a date Monday night. I have another chemo treatment this Friday and I'm dreading it. BUT, this is the 4th treatment and the LAST of the nasty awful poison that knocks me off my feet. I'm told that the next 4 treatments will be a lot easier and my hair might even start growing back.
The kids are still doing wonderful. Cooper loves to go to my doctor appointments with me because he is sure that one of these times he'll get to see some sort of surgery with at least a little blood. I swear, if I could get the kid a stool to stand beside a doctor in the OR, he'd be in heaven. Maybe he'll turn out to be a doctor some day and change the lives of many. Shelby just turned 8 and has the heart and soul of a wise old woman and talks as though she's 16. When we first found out I had cancer, I immediately went into protect mode and wanted to make sure I protected my kids from all that comes with a mother's cancer diagnosis. I didn't ever want them to be scared or unsure of what our futures held for us. For the last few months, I truly thought I had done a good job of protecting them, but I was dead wrong. Cooper is still very curious about my scars and that's about it, which is just fine with me. The less he worries, the better. But sweet little Shelby, that poor girl has been internalizing A LOT of her feelings and I had no idea. Last night, we had a heart to heart and she unloaded EVERYTHING. It all started because she told me she wanted to get her hair cut so she could donate it and she started to cry. She's worried that with all the forest fires, all the trees are going to burn down and we are going to run out of oxygen, so she wants to start a website to take donations and she'll start replanting the trees herself. She's worried that her Auntie Carrie, Uncle Dave and Grandma in Austin are going to get hit with a tsunami (I can't convince her that won't happen). She's worried that all the fighting that her and Cooper do now is going to lead to a troubled relationship as adults. She's worried that I'm going to die. I couldn't believe what I was hearing. My sweet Shelby truly had felt like the weight of the world was on her shoulders and she couldn't talk to me about it because I was too sick. She's only 8!!!! These aren't things that she should be thinking about!!!! She should be worrying about which American Girl doll to play with or which color to paint her nails! So this morning, we painted her nails and this afternoon she gets her hair cut. Just when I thought I had it all figured out, she reminds me that I was way off. I hate that my kids have to watch me go thru this, but we are one tight family unit and if cancer thinks for one second that it can break that bond, well.... to avoid expletives here.....I will just say - CANCER ... BLESS YOU!
To those that have had your mammograms recently or done your self exams - GOOD JOB!!!! To those that haven't - GET IT DONE! Seriously people, I would have been dead by the time I was 40 if I hadn't done my own exam. And if you haven't hugged your kids today, go hug them. And if you haven't told someone you love that you love them, go tell them.
Our trip to Disneyland was absolutely magical! It completely exceeded any and all expectations that I had. I was so worried that I wouldn't feel well enough to enjoy our time there, but it's amazing what one can do with a positive attitude (and a wheelchair). Watching Shelby and Cooper's eyes dance with excitement made my heart so happy! We developed a great routine right from the start - get up early and go to the park, head back to the hotel around 2:00 for swimming, then dinner, then to the room for some rest. I couldn't get in the pool, but I could certainly enjoy the music and my non-alcoholic daquiri while I laid back in the shade and watched. I love to people watch - and a hotel pool in southern CA is a great place to do that! I don't know what I would have done without Bobby. He put his heart and soul into making this trip possible. He pushed me around Disneyland in a wheelchair, which proved to be challenging at times with the big crowds, and never once crashed, complained or took out the people in front of us. We seriously couldn't wipe the smiles off our faces all week. It was great to get away from everything and just enjoy being a family and laugh till it hurt. Then it was back to reality...
My last chemo treatment was awful. AWFUL!!! It hit me like a mack truck. I got so sick and the fatigue was debilitating. Trying to stay upbeat and positive was impossible. My positive attitude was out the door and nothing was right in my world. I cried and cried and cried some more and then when I thought I was all out of tears, I'd cry even more. I couldn't believe what was happening to me. If I haven't said it lately...I HATE CANCER!!!! I'm so over it. We were supposed to go to Colorado over the 4th of July weekend and I couldn't go - I was too sick. So, we made the decision to let the kids go with my parents. I had never been away from my kids for that long (5 days) and this was a trip we were supposed to take together, but the cards just didn't get dealt that way this time. The kids had the best time and, once again, were able to laugh till it hurt and not worry about me. By Sunday, I was starting to feel better and getting back to what I call normal these days and the kids came home Tuesday. Bobby and I actually even went on a date Monday night. I have another chemo treatment this Friday and I'm dreading it. BUT, this is the 4th treatment and the LAST of the nasty awful poison that knocks me off my feet. I'm told that the next 4 treatments will be a lot easier and my hair might even start growing back.
The kids are still doing wonderful. Cooper loves to go to my doctor appointments with me because he is sure that one of these times he'll get to see some sort of surgery with at least a little blood. I swear, if I could get the kid a stool to stand beside a doctor in the OR, he'd be in heaven. Maybe he'll turn out to be a doctor some day and change the lives of many. Shelby just turned 8 and has the heart and soul of a wise old woman and talks as though she's 16. When we first found out I had cancer, I immediately went into protect mode and wanted to make sure I protected my kids from all that comes with a mother's cancer diagnosis. I didn't ever want them to be scared or unsure of what our futures held for us. For the last few months, I truly thought I had done a good job of protecting them, but I was dead wrong. Cooper is still very curious about my scars and that's about it, which is just fine with me. The less he worries, the better. But sweet little Shelby, that poor girl has been internalizing A LOT of her feelings and I had no idea. Last night, we had a heart to heart and she unloaded EVERYTHING. It all started because she told me she wanted to get her hair cut so she could donate it and she started to cry. She's worried that with all the forest fires, all the trees are going to burn down and we are going to run out of oxygen, so she wants to start a website to take donations and she'll start replanting the trees herself. She's worried that her Auntie Carrie, Uncle Dave and Grandma in Austin are going to get hit with a tsunami (I can't convince her that won't happen). She's worried that all the fighting that her and Cooper do now is going to lead to a troubled relationship as adults. She's worried that I'm going to die. I couldn't believe what I was hearing. My sweet Shelby truly had felt like the weight of the world was on her shoulders and she couldn't talk to me about it because I was too sick. She's only 8!!!! These aren't things that she should be thinking about!!!! She should be worrying about which American Girl doll to play with or which color to paint her nails! So this morning, we painted her nails and this afternoon she gets her hair cut. Just when I thought I had it all figured out, she reminds me that I was way off. I hate that my kids have to watch me go thru this, but we are one tight family unit and if cancer thinks for one second that it can break that bond, well.... to avoid expletives here.....I will just say - CANCER ... BLESS YOU!
To those that have had your mammograms recently or done your self exams - GOOD JOB!!!! To those that haven't - GET IT DONE! Seriously people, I would have been dead by the time I was 40 if I hadn't done my own exam. And if you haven't hugged your kids today, go hug them. And if you haven't told someone you love that you love them, go tell them.
Thursday, June 9, 2011
I'm bald and going to Disneyland!
This past weekend was quite an emotional one. Chemo was on Friday and that always sucks. Shelby's birthday party was on Saturday and I actually made it thru, even danced a few dances -- I shouldn't have, but I did. :) Sunday morning, I woke up to get ready for church and when I began to wash what little hair I had, I realized my hands were covered in hair. It was really sad. I knew it was coming, but I suppose it was kind of like a looming death of someone who has been ill, you know it's going to happen, but when it happens nothing quite prepares you for the overwhelming emotions. I couldn't believe it! I sat in the shower for an hour and cried hysterically while I repeatedly ran my hands over my head. Needless to say, me and my puffy eyes didn't make it to church. That night Bobby razor shaved the remaining few hairs for me, so now we are sporting matching white shiny bowling balls. I've noticed my eyebrows have started to thin out, too - time to get out the sharpie and draw them in! :) BUT on the upside, I've done 2 of the 4 crappy treatments with the medicine that really knocks my socks off. After that, I will do 4 treatments of another medicine and I hear it won't be near as bad as the first go round. It amazes me that it takes such powerful and dangerous chemicals to rid my body of the cancer cells. I can't wait to eat what I want to eat, when I want to eat and chase it down with a beer. Seriously, I can't wait!!!! My esophagus is so jacked up, the only thing that goes down comfortably is KFC Mashed Potatoes and Gravy. Yummy!!
I get a 3 week break between treatments this time because WE ARE GOING TO DISNEYLAND ON SUNDAY!!!!! Mickey called the house this morning to tell the kids how excited he and Minnie are to see us. Seriously, I'm not sure who is more excited, Bobby and I or the kids! It's going to be a fantastic week. I don't think the kids have any idea what they are in for!!!
I want to thank each and everyone of you who have sent messages and cards. They truly mean so much and even though I don't always have the chance to respond to each individual message, I want you to know that they ALWAYS help bring my spirits up....even if it's just for 10 minutes. A positive attitude is hard to come by these days, so the messages are always wonderful to read and hear. If I haven't said it lately, CANCER SUCKS! I can't wait to have this part of my life behind me. Take care everyone!
I get a 3 week break between treatments this time because WE ARE GOING TO DISNEYLAND ON SUNDAY!!!!! Mickey called the house this morning to tell the kids how excited he and Minnie are to see us. Seriously, I'm not sure who is more excited, Bobby and I or the kids! It's going to be a fantastic week. I don't think the kids have any idea what they are in for!!!
I want to thank each and everyone of you who have sent messages and cards. They truly mean so much and even though I don't always have the chance to respond to each individual message, I want you to know that they ALWAYS help bring my spirits up....even if it's just for 10 minutes. A positive attitude is hard to come by these days, so the messages are always wonderful to read and hear. If I haven't said it lately, CANCER SUCKS! I can't wait to have this part of my life behind me. Take care everyone!
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