Nearly everyday I can hold it all together. I smile. I laugh. I live an altered, but normal life. I don't often think on the negative thoughts, the harsh reality of my situation. Today is that rare exception. I'm having a day.
It started with an overwhelming sadness for all the families that have loved ones dealing with stupid c*****, especially when it's a child. One family mourns the loss of their four year old daughter to brain c***** while another sits in a hospital room with their two year old son who has leukemia. The sadness soon turns to anger and I just want to scream and start smashing things.
I hate it. I hate all of it. I hate that parents have to say good bye to their babies and I hate that babies have to say good bye to their parents. The thought that my children might have to grow up without me, well, is quite frankly, unbearable.
A few weeks ago, as I was sitting at a soccer game, one of the other parents was talking about two years from now when Brennan would be playing soccer for the high school. My first thought was, gee I don't even know if I'll be around to see that. Of course, I didn't say anything out loud that would give any indication that that was my thought. That was the first time I had thought about a future event in my children's life and the possibility of me not being in it. I have cried at the thought of my children not having their mother, but this was different. It seemed more personal if that makes any sense.
So, I lay here, crying. Doubting everything. Hating everything. And fearful of what my future holds.
It's these moments, when the thoughts are more than I can handle, when there's nothing else to hold on to, all I can do is pray. Cry and pray.
By morning, everything will be back to status quo and my moment will be over... until next time.
Wednesday, October 23, 2013
Wednesday, October 16, 2013
Carrie
My husband had a child support hearing today and since his ex is so interested in reading my blog and attempting to use my posts in court to increase her child support, I thought I would write her this letter.
Carrie:
When I had heard the things you had to say today, I must admit I was upset, for about 5 minutes. Then I reminded myself that you are just another uninformed individual spouting off your opinions without knowing (1) the facts of my particular situation, (2) the complications that go along with all the prescribed medical treatments that the doctors gave me as choices or (3) statistical chances of my recovery given the highly aggressive form of c***** that I have.
We clearly are very different people. When my children or I have issues arise, I look at what is the root cause of the problem and don't just try to fix it by treating the symptoms. Take for instance my son. At an early age he was very hyper, had speech problems, threw temper tantrums that lasted for hours, had trouble counting and learning his letters. It was very obvious to me that something was going on. Sure, I was offered prescription drugs so that his behavior would be manageable and my life would be easier, but I didn't consider that an option. I changed his diet and put him in sports and his behavior and learning disabilities were no longer an issue. He is still dyslexic, that will never go away. Fortunately, he has other outlets for him to feel successful other than school, such as soccer and baseball and Bible quiz. So yes, I do encourage those things. They're good for him. They give him an outlet and are much less expensive than paying a psychiatrist to boost his self esteem. And also, help to take his mind off the fact that his mother has c*****.
I also encourage my children to work. Brennan has for the last two years refereed and mowed grass to earn money. All four of them rake leaves and shovel snow. They know if they want something extra that they will have to use their own money. I'm not buying them brand name shoes or clothes. I'll never buy them a phone. If they want to buy something or go somewhere they know that comes out of their own money. I want them to know that they have to work for the things they want.
Now, I know you only said the things you said today because your only concern is making sure you get more child support. I know you don't feel as though the almost $400 a month that is paid to you is enough. The only thing I can say is I'm sorry. I'm sorry that Bob doesn't make more money. I'm sorry that you lack compassion and empathy. I'm sorry that after 14 years you are still bitter and resentful.
Your understanding of how c***** is treated is very limited. To say that "she should get a double mastectomy and just be done with it" is not only, well, cold and insensitive, it was completely inappropriate and it crossed boundaries that just shouldn't be crossed. I should also add that I wouldn't "just be done with it". You see, the c***** tumors that I have are just a symptom of a bigger problem, but I don't expect you to understand that.
I doubt you have spent any time researching the side effects of chemo as you have never had to have that poison put into your veins. I have. I have read the side effects. I understand them quite well. I, after only having two rounds of chemo, am still experiencing side effects. Knowing that c***** is one of the side effects to both chemo and radiation did make me just a little hesitant to continue that route. In all honesty, I didn't like any of my options. But since I wasn't given the choice whether I wanted c***** or not, I picked what I felt would be best option for my family and me long term given my circumstances.
But please know that my blog was created so that people who actually care about me and my family could be updated on my health status and my progress, not so that you or your private investigator could obtain information that you had hoped would help you achieve your goal of getting more child support.
I had considered for a second not writing my blog any more, but then changed my mind. I don't care if you read it, in fact, I encourage you to. Perhaps you will gain more than just information to use "against us". Maybe you will actually learn something and can become a more informed person.
I pray that someday you won't have to go through what I am going through, but with the c***** rates being what they are (1 in 3) there is over a 30% chance that you will. If or when that day comes you can make whatever choice you want. Since this is my breast c***** I get to make my decisions. I get to decide what is best for me, not you.
Now if you'll excuse me, I have better things to do, like fight for my life.
Carrie:
When I had heard the things you had to say today, I must admit I was upset, for about 5 minutes. Then I reminded myself that you are just another uninformed individual spouting off your opinions without knowing (1) the facts of my particular situation, (2) the complications that go along with all the prescribed medical treatments that the doctors gave me as choices or (3) statistical chances of my recovery given the highly aggressive form of c***** that I have.
We clearly are very different people. When my children or I have issues arise, I look at what is the root cause of the problem and don't just try to fix it by treating the symptoms. Take for instance my son. At an early age he was very hyper, had speech problems, threw temper tantrums that lasted for hours, had trouble counting and learning his letters. It was very obvious to me that something was going on. Sure, I was offered prescription drugs so that his behavior would be manageable and my life would be easier, but I didn't consider that an option. I changed his diet and put him in sports and his behavior and learning disabilities were no longer an issue. He is still dyslexic, that will never go away. Fortunately, he has other outlets for him to feel successful other than school, such as soccer and baseball and Bible quiz. So yes, I do encourage those things. They're good for him. They give him an outlet and are much less expensive than paying a psychiatrist to boost his self esteem. And also, help to take his mind off the fact that his mother has c*****.
I also encourage my children to work. Brennan has for the last two years refereed and mowed grass to earn money. All four of them rake leaves and shovel snow. They know if they want something extra that they will have to use their own money. I'm not buying them brand name shoes or clothes. I'll never buy them a phone. If they want to buy something or go somewhere they know that comes out of their own money. I want them to know that they have to work for the things they want.
Now, I know you only said the things you said today because your only concern is making sure you get more child support. I know you don't feel as though the almost $400 a month that is paid to you is enough. The only thing I can say is I'm sorry. I'm sorry that Bob doesn't make more money. I'm sorry that you lack compassion and empathy. I'm sorry that after 14 years you are still bitter and resentful.
Your understanding of how c***** is treated is very limited. To say that "she should get a double mastectomy and just be done with it" is not only, well, cold and insensitive, it was completely inappropriate and it crossed boundaries that just shouldn't be crossed. I should also add that I wouldn't "just be done with it". You see, the c***** tumors that I have are just a symptom of a bigger problem, but I don't expect you to understand that.
I doubt you have spent any time researching the side effects of chemo as you have never had to have that poison put into your veins. I have. I have read the side effects. I understand them quite well. I, after only having two rounds of chemo, am still experiencing side effects. Knowing that c***** is one of the side effects to both chemo and radiation did make me just a little hesitant to continue that route. In all honesty, I didn't like any of my options. But since I wasn't given the choice whether I wanted c***** or not, I picked what I felt would be best option for my family and me long term given my circumstances.
But please know that my blog was created so that people who actually care about me and my family could be updated on my health status and my progress, not so that you or your private investigator could obtain information that you had hoped would help you achieve your goal of getting more child support.
I had considered for a second not writing my blog any more, but then changed my mind. I don't care if you read it, in fact, I encourage you to. Perhaps you will gain more than just information to use "against us". Maybe you will actually learn something and can become a more informed person.
I pray that someday you won't have to go through what I am going through, but with the c***** rates being what they are (1 in 3) there is over a 30% chance that you will. If or when that day comes you can make whatever choice you want. Since this is my breast c***** I get to make my decisions. I get to decide what is best for me, not you.
Now if you'll excuse me, I have better things to do, like fight for my life.
Sunday, October 6, 2013
Crunch Time
Okay. So here it is. I have the written report from my last breast ultrasound. And, well, as I said before, it isn't pretty.
The report states:
The known carcinoma in the right breast at 11 o'clock measures 1.6 (ouch! It previously was measuring .89 cm in mid-June) The previously described .9 cm hypoechoic nodule in the right breast at 1 o'clock is stable. (This nodule was first detected in February but the doctors felt it was nothing to worry about. By stable they just mean it hasn't grown) There are two new hypoechoic .5 cm nodules in the right breast at 2 o'clock and 10 o'clock. There is a .8 cm vascular mass in the left breast at 3 o'clock and a .4 cm hypoechoic nodule in the left breast at 2 o'clock. No axillary lymphadenopathy (disease of the lymph nodes) is identified. (This is the only good news in the whole report. This is very significant because this means that it hasn't spread outside the breast to the lymph nodes)
Recommendation: Ultrasound guided breast core biopsy of the .8 cm mass in left breast and fine needle aspiration biopsy of the .5 cm nodule in the right breast.
So to summarize what the results say, basically I went from two known masses, one being c*****ous and one not, to 6 masses in total, 4 new ones ranging in size from .4 cm to .8 cm. Of course without the biopsy it is unknown whether these masses are c*****ous or not.
My thoughts on the results.
On the day of the ultrasound, I spoke with the radiologist who reads the images and writes the reports and makes recommendations based on what she sees. Immediately, I had issues with what she was telling me. She said that the last place I went, which was Three River Thermography in the North Hills, didn't take images of the left breast at all. WRONG!! I know that is completely wrong as does everyone who has been following this blog for awhile. I know they took images of the left breast because I had the written report and I shared the findings of that report in a post.
The second thing she said which makes me question her accuracy is that the last ultrasound didn't show the c*****ous lump at all. She repeatedly told me that the written report from the last ultrasound was only about the mass in the 1 o'clock position (the non-c*****ous lump) and not the mass in the 11 o'clock position (the c*****ous lump) WRONG AGAIN!! I know that's wrong. When I had the ultrasound done in June I specifically told the tech where the c*****ous mass was. We talked about it extensively. She was very thorough. And again, I read the report. That's not what it said.
I did question this doctor about what she was saying but without the written report in my hands to show her I didn't have much of an argument. So let that be a lesson to me to always bring all my past test results.
I don't know if I believe that all the new masses are c*****ous or not. I know that 80% of all biopsies end up being nothing. So perhaps they're nothing, perhaps they're something. I don't know. I do know that what I have been doing isn't working and I don't need to have a biopsy to tell me that.
I sat quietly while listening to the doctor tell me her recommendations. If nothing else, through this I have learned not to make any decisions right away. So when she asked me if I wanted to schedule the biopsies I told her I would need to think about it. I have since then respectfully declined.
Many of you may disagree with my decision and not understand why I am choosing not to have them done. Let me try to explain my thought process. What's the point? What purpose would the test serve? I know what I have been doing isn't working. Maybe it's just me, but I don't see a good reason to have two more biopsies and two more titanium markers put into my body to tell me something I already know- I HAVE C*****!! To me, her recommendations to have two biopsies done was the equivalent of going to a restaurant and having the server try to sell me dessert. It was more about the business of making money and didn't serve any real purpose.
How do I feel about the results?
I was visibly upset the day of the ultrasound, though I didn't cry. Who wouldn't be, right? But admittedly, I wasn't expecting good results. I was fully prepared to hear that the mass had grown, just not as much as it did. After all, I could now feel it again when I wasn't able to before.
Now, I'm glad. I'm glad I got the results that I did because it was the kick in the gut that I needed. It gave me the motivation to give this all that I have.
Why wasn't it working?
Clearly, when I started on this path I had success. The mass was shrinking. So what happened?
I'll tell you what happened. I got comfortable. I looked at the plate of shredded cheese and thought to myself one little pinch won't kill me. Soon that became one little pinch every time I fixed a plate for one of the kids. Then just as we all think that the calories from the kids plates don't count (or is that just me?) I started taking a bite here, a bite there. Nothing ever of any significance, but it all adds up. Then I realized that the salsa I was eating had sugar listed as an ingredient. Those are the two big no-no's right there- sugar and animal protein. Then even though I was on a vegan diet, except for those bites here and there, I wasn't eating nearly enough vegetables.
You may remember that I had been on supplements, but stopped taking them months ago due to lack of money. They are super expensive, costing us $800 monthly. At first there was money from fundraising that helped cover the costs but when that ran out I decided I would try another less expensive regimen. In my defense, I've never cured c***** before. This is all trial and error. Basically, I have become my own guinea pig.
What is my plan now?
The plan is do what works. I had success before, so I need to go back to what I was doing. I'm juicing- greens, beets, carrots, apple- two 16 oz glasses a day, drinking my 32 oz of carrot juice a day, vitamin drinks, dark green leafy salads, various vegetable soups, and I'm back on my supplements - 80 a day, inferred light, fresh air, and rebounding.
I have given myself six weeks. If at the end of six weeks I haven't had significant progress, then I don't know what because I'm not even allowing myself to think of failing as an option. Failing isn't an option.
At the end of the day I want to be able to kiss those little faces goodnight and know that I did everything possible. Week one was flawless.
I've often said that I'm not a procrastinator, I just work better under pressure. Well, it's definitely crunch time. It's time to do this!!
The report states:
The known carcinoma in the right breast at 11 o'clock measures 1.6 (ouch! It previously was measuring .89 cm in mid-June) The previously described .9 cm hypoechoic nodule in the right breast at 1 o'clock is stable. (This nodule was first detected in February but the doctors felt it was nothing to worry about. By stable they just mean it hasn't grown) There are two new hypoechoic .5 cm nodules in the right breast at 2 o'clock and 10 o'clock. There is a .8 cm vascular mass in the left breast at 3 o'clock and a .4 cm hypoechoic nodule in the left breast at 2 o'clock. No axillary lymphadenopathy (disease of the lymph nodes) is identified. (This is the only good news in the whole report. This is very significant because this means that it hasn't spread outside the breast to the lymph nodes)
Recommendation: Ultrasound guided breast core biopsy of the .8 cm mass in left breast and fine needle aspiration biopsy of the .5 cm nodule in the right breast.
So to summarize what the results say, basically I went from two known masses, one being c*****ous and one not, to 6 masses in total, 4 new ones ranging in size from .4 cm to .8 cm. Of course without the biopsy it is unknown whether these masses are c*****ous or not.
My thoughts on the results.
On the day of the ultrasound, I spoke with the radiologist who reads the images and writes the reports and makes recommendations based on what she sees. Immediately, I had issues with what she was telling me. She said that the last place I went, which was Three River Thermography in the North Hills, didn't take images of the left breast at all. WRONG!! I know that is completely wrong as does everyone who has been following this blog for awhile. I know they took images of the left breast because I had the written report and I shared the findings of that report in a post.
The second thing she said which makes me question her accuracy is that the last ultrasound didn't show the c*****ous lump at all. She repeatedly told me that the written report from the last ultrasound was only about the mass in the 1 o'clock position (the non-c*****ous lump) and not the mass in the 11 o'clock position (the c*****ous lump) WRONG AGAIN!! I know that's wrong. When I had the ultrasound done in June I specifically told the tech where the c*****ous mass was. We talked about it extensively. She was very thorough. And again, I read the report. That's not what it said.
I did question this doctor about what she was saying but without the written report in my hands to show her I didn't have much of an argument. So let that be a lesson to me to always bring all my past test results.
I don't know if I believe that all the new masses are c*****ous or not. I know that 80% of all biopsies end up being nothing. So perhaps they're nothing, perhaps they're something. I don't know. I do know that what I have been doing isn't working and I don't need to have a biopsy to tell me that.
I sat quietly while listening to the doctor tell me her recommendations. If nothing else, through this I have learned not to make any decisions right away. So when she asked me if I wanted to schedule the biopsies I told her I would need to think about it. I have since then respectfully declined.
Many of you may disagree with my decision and not understand why I am choosing not to have them done. Let me try to explain my thought process. What's the point? What purpose would the test serve? I know what I have been doing isn't working. Maybe it's just me, but I don't see a good reason to have two more biopsies and two more titanium markers put into my body to tell me something I already know- I HAVE C*****!! To me, her recommendations to have two biopsies done was the equivalent of going to a restaurant and having the server try to sell me dessert. It was more about the business of making money and didn't serve any real purpose.
How do I feel about the results?
I was visibly upset the day of the ultrasound, though I didn't cry. Who wouldn't be, right? But admittedly, I wasn't expecting good results. I was fully prepared to hear that the mass had grown, just not as much as it did. After all, I could now feel it again when I wasn't able to before.
Now, I'm glad. I'm glad I got the results that I did because it was the kick in the gut that I needed. It gave me the motivation to give this all that I have.
Why wasn't it working?
Clearly, when I started on this path I had success. The mass was shrinking. So what happened?
I'll tell you what happened. I got comfortable. I looked at the plate of shredded cheese and thought to myself one little pinch won't kill me. Soon that became one little pinch every time I fixed a plate for one of the kids. Then just as we all think that the calories from the kids plates don't count (or is that just me?) I started taking a bite here, a bite there. Nothing ever of any significance, but it all adds up. Then I realized that the salsa I was eating had sugar listed as an ingredient. Those are the two big no-no's right there- sugar and animal protein. Then even though I was on a vegan diet, except for those bites here and there, I wasn't eating nearly enough vegetables.
You may remember that I had been on supplements, but stopped taking them months ago due to lack of money. They are super expensive, costing us $800 monthly. At first there was money from fundraising that helped cover the costs but when that ran out I decided I would try another less expensive regimen. In my defense, I've never cured c***** before. This is all trial and error. Basically, I have become my own guinea pig.
What is my plan now?
The plan is do what works. I had success before, so I need to go back to what I was doing. I'm juicing- greens, beets, carrots, apple- two 16 oz glasses a day, drinking my 32 oz of carrot juice a day, vitamin drinks, dark green leafy salads, various vegetable soups, and I'm back on my supplements - 80 a day, inferred light, fresh air, and rebounding.
I have given myself six weeks. If at the end of six weeks I haven't had significant progress, then I don't know what because I'm not even allowing myself to think of failing as an option. Failing isn't an option.
At the end of the day I want to be able to kiss those little faces goodnight and know that I did everything possible. Week one was flawless.
I've often said that I'm not a procrastinator, I just work better under pressure. Well, it's definitely crunch time. It's time to do this!!
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