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!!!
Friday, December 28, 2012
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 ... :)
This was the view from our balcony! Amazeballs!!!
Look how close the ocean was! And the pool right below? Seriously!
Drinks, oceanside :)
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.
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