First, please forgive any errors, I'm trying to post this from my phone and everything seems a little off.
Now, as I lie here with Levi after a pretty horrific couple of weeks pretty much wishing for a faster death, I am beginning to feel hopeful again. I know that we're finished with the radiation to the tumors in my brain and that I've been told there is nothing else we can do, drug or chemo wise, to treat the disease left in my lungs; yet I lie here hopeful. God can still do ANYTHING He chooses to do with me. I could get better, or worse, bur it is totally out if my control. I pray they there will be much more laughter than tears in the days to come (and hopefully a few trips!) and that I can truly learn about love and grace and all that good stuff. I pray for a proper perspective and no depression. I pray that God will suck the anger and irritability out of my soul and that my family friends will enjoy a season of peace. I can be honest here and say this has been a nightmare couple of weeks with me getting do suck seemingly so fast. My husband has carried a n enormous burden with grace and dignity in the face of a huge unknown. I am blessed to have such a loving caretaker. My oldest and his older sister have stepped up helping with the younger ones and we ate now taking it one day at a time praying fervently for a miracle while somehow staying in the realism of the diagnosis given. It is more fun to hope, though, right? Today, I am choosing to be happy. I am choosing to LIVE, not die. I hope you all will join me.
Much love....
Monday, April 2, 2012
Monday, February 13, 2012
special days
Valentine's Day. How do you spend your Valentine's Day? For most of my life I spent it celebrating the birth of my mother; she would have been 60 this year. This year I will be celebrating it in Nashville with my honey. We will start our day early with an NPO fast as we head to Sarah Cannon for some blood work and a meeting with Dr. Infante. Then, at 10:50 I get to break my fast with some wonderful contrast as I await my scheduled 11:50 ct. Yummy! If everything goes as planned (like that EVER really happens for us!) we will be able to have lunch before heading to the Centennial Heart Center for an echocardiogram at 3:15. Nice, right? I'm sure the few of you reading my musings wish you were having such an exciting Valentine's Day! To be honest, I do not remember how we spent my mother's last birthday, but if, God forbid, this is my last Valentine's, my DH will always remember how we spent this one, ha!!
BUT, the really special day is Feb.15. Yes, you read that correctly. Feb. 15. As this is the day Cristina Boudah turns 40. Yay! And guess what I get to do to celebrate?!? Wicked, oh yeah, we're going to see Wicked, thanks to my wonderful friend Pamela the Beautiful, I actually am seeing it on my birthday. Then, as we all know you can't just celebrate your 40th birthday for one day, a group of us (not sure who all as of yet) are hopefully seeing Rock of Ages this weekend. Eat your heart out Dr. Cox! It's 80's hair band time and I am all about it! Then, on Feb. 20, if all goes well with my tests today, I get to start the trial with a week in Nashville. No one celebrates a birthday with my style, I don't care who you are ;p
And don't forget about Wicked, again on March 4, because I promised my wonderful son we would go for my birthday. See it just keeps on going. I don't know how we're going to top this when I turn 50. You better start planning now Donald!
So here we are...praying, praying, praying that God will use this new drug to eradicate the cancer in my body. I am praying that we will see a miracle. I am praying that we will remain positive, grateful, faithful, and most of all hopeful through out this next phase of our journey. Wow, that's a lot "fuls"! I do believe in the goodness of God and I do believe I will see it in the land of the living. I see it every day in the laughter of my children, the music on the radio, even the moron who slows me down on the Parkway and keeps me from getting a ticket. His goodness and His love surrounds me even when it isn't celebrate Cristina month :)
So...special days are here and special days are coming. I am excited. I hope you are too.
Much love.....
BUT, the really special day is Feb.15. Yes, you read that correctly. Feb. 15. As this is the day Cristina Boudah turns 40. Yay! And guess what I get to do to celebrate?!? Wicked, oh yeah, we're going to see Wicked, thanks to my wonderful friend Pamela the Beautiful, I actually am seeing it on my birthday. Then, as we all know you can't just celebrate your 40th birthday for one day, a group of us (not sure who all as of yet) are hopefully seeing Rock of Ages this weekend. Eat your heart out Dr. Cox! It's 80's hair band time and I am all about it! Then, on Feb. 20, if all goes well with my tests today, I get to start the trial with a week in Nashville. No one celebrates a birthday with my style, I don't care who you are ;p
And don't forget about Wicked, again on March 4, because I promised my wonderful son we would go for my birthday. See it just keeps on going. I don't know how we're going to top this when I turn 50. You better start planning now Donald!
So here we are...praying, praying, praying that God will use this new drug to eradicate the cancer in my body. I am praying that we will see a miracle. I am praying that we will remain positive, grateful, faithful, and most of all hopeful through out this next phase of our journey. Wow, that's a lot "fuls"! I do believe in the goodness of God and I do believe I will see it in the land of the living. I see it every day in the laughter of my children, the music on the radio, even the moron who slows me down on the Parkway and keeps me from getting a ticket. His goodness and His love surrounds me even when it isn't celebrate Cristina month :)
So...special days are here and special days are coming. I am excited. I hope you are too.
Much love.....
Wednesday, February 1, 2012
sorry for the delay
Since it's been such a long long time that I posted a blog entry, this one is going to be lengthy. Sorry!
The last time I did an update that was not on facebook, I was taking a combo of Carboplatin and Taxotere and my cancer was shrinking. I had a ct on October 18 that showed no growth in my lungs, but the next day I noticed a painful spot under my right arm. I continued on the chemo and we just watched the lymph node hoping it would shrink. It did not. A biopsy around Thanksgiving confirmed a recurrence of cancer in the node therefore a change of chemo was required.
During this time I had also been very sick with an upper respiratory infection that morphed into a sinus infection headaches causing so severe I decided the cancer had moved to my brain and I was going to die. I did not. An MRI was clear (notice I did not say normal) and 3 rounds of antibiotics later I was feeling much better and we started the Havalen. The weekend after my first dose was AWFUL; so awful we thought I was not going to be able to stay on it. I asked for specfic prayer requests and the side effects became tolerable. It seemed to be working on the disease in my lungs, but the tumor in my lymph node continued to grow and became increasingly painful. A ct on January 10 confirmed my fears and we are on to a new drug.
Gemzar. The Gemzar hit my counts pretty hard and the fatigue has had me in bed most days. The pain has also become excruciating, leaving me sometimes counting the minutes until I can take my next pill. On a side note, ibuprofen gets rid of the pain, but I am not allowed to take it because it thins my blood. On a stupid note, when I called for a refill and to complain about the pain, Kim at The Cancer Center, asked if two pills worked and, while I did admit to taking two at a time, I told her I don't like to do that because the prescription is for one. It isn't. I do so wish I could read.
When we found out the Havalen was not working as well as Dr. Gualtieri had hoped, his nurses started the process of getting me an appointment at The Sarah Cannon Research Institute in Nashville, TN. Apparently there are quite a few new oncology drugs that have been developed there and he had high hopes that I can get into a clinical trial that will kill my cancer without killing me. I met with Dr. Infante on Tuesday, January 31, which brings us to today.
Dr. Infante has stopped the Gemzar and is ordering another ct to see whether or not it is working. If it is not, I have one option now and two other possibilities. Since I have triple negative (progesterone negative, estrogen negative, and Her-2 negative) breast cancer, my treatment options have been, and are, quite limited. Dr. Infante says one of the tests used for my Her-2 status uses a scale of 0-3 with 0 being absolutely negative and 3 being absolutely positive. My tumor was a 2+ which they consider borderline and means I am eligible for a Phase I study of the drug MGAH22. He is very hopeful that my cancer will respond to its first targeted therapy. The study will involve a first visit lasting one week and then weekly treatments thereafter. I will be evaluated at 50 days and if the cancer responds, I can stay on the drug as long as it works.
Other two studies involve testing of my tumor to look for specific properties in order to be eligible. One is a Phase I/II study of GSK2636771 of patients with tumors that have PTEN deficiency. The only thing I really understand is that some sort of protein is missing and the drug does something with that. I am asking that those of you who pray, pray that my tumor is PTEN deficient and that I will qualify for this study also. The other study we are looking at is a Phase I study of BGJ398 a pan FGF-R kinase inhibitor and I have no idea what that means. I just know if the other two don't work, I want this one, so please pray that I am eligible for it also!
So, here we are, oh so hopeful, a little afraid, and a little excited. I pray for a cure every day, but I'll settle for a manageable, chronic illness. Thanks to all of you who have joined me and my family on this journey. I will do my best to update more often and at the same time try to be more amusing and interesting :)
Much love....
The last time I did an update that was not on facebook, I was taking a combo of Carboplatin and Taxotere and my cancer was shrinking. I had a ct on October 18 that showed no growth in my lungs, but the next day I noticed a painful spot under my right arm. I continued on the chemo and we just watched the lymph node hoping it would shrink. It did not. A biopsy around Thanksgiving confirmed a recurrence of cancer in the node therefore a change of chemo was required.
During this time I had also been very sick with an upper respiratory infection that morphed into a sinus infection headaches causing so severe I decided the cancer had moved to my brain and I was going to die. I did not. An MRI was clear (notice I did not say normal) and 3 rounds of antibiotics later I was feeling much better and we started the Havalen. The weekend after my first dose was AWFUL; so awful we thought I was not going to be able to stay on it. I asked for specfic prayer requests and the side effects became tolerable. It seemed to be working on the disease in my lungs, but the tumor in my lymph node continued to grow and became increasingly painful. A ct on January 10 confirmed my fears and we are on to a new drug.
Gemzar. The Gemzar hit my counts pretty hard and the fatigue has had me in bed most days. The pain has also become excruciating, leaving me sometimes counting the minutes until I can take my next pill. On a side note, ibuprofen gets rid of the pain, but I am not allowed to take it because it thins my blood. On a stupid note, when I called for a refill and to complain about the pain, Kim at The Cancer Center, asked if two pills worked and, while I did admit to taking two at a time, I told her I don't like to do that because the prescription is for one. It isn't. I do so wish I could read.
When we found out the Havalen was not working as well as Dr. Gualtieri had hoped, his nurses started the process of getting me an appointment at The Sarah Cannon Research Institute in Nashville, TN. Apparently there are quite a few new oncology drugs that have been developed there and he had high hopes that I can get into a clinical trial that will kill my cancer without killing me. I met with Dr. Infante on Tuesday, January 31, which brings us to today.
Dr. Infante has stopped the Gemzar and is ordering another ct to see whether or not it is working. If it is not, I have one option now and two other possibilities. Since I have triple negative (progesterone negative, estrogen negative, and Her-2 negative) breast cancer, my treatment options have been, and are, quite limited. Dr. Infante says one of the tests used for my Her-2 status uses a scale of 0-3 with 0 being absolutely negative and 3 being absolutely positive. My tumor was a 2+ which they consider borderline and means I am eligible for a Phase I study of the drug MGAH22. He is very hopeful that my cancer will respond to its first targeted therapy. The study will involve a first visit lasting one week and then weekly treatments thereafter. I will be evaluated at 50 days and if the cancer responds, I can stay on the drug as long as it works.
Other two studies involve testing of my tumor to look for specific properties in order to be eligible. One is a Phase I/II study of GSK2636771 of patients with tumors that have PTEN deficiency. The only thing I really understand is that some sort of protein is missing and the drug does something with that. I am asking that those of you who pray, pray that my tumor is PTEN deficient and that I will qualify for this study also. The other study we are looking at is a Phase I study of BGJ398 a pan FGF-R kinase inhibitor and I have no idea what that means. I just know if the other two don't work, I want this one, so please pray that I am eligible for it also!
So, here we are, oh so hopeful, a little afraid, and a little excited. I pray for a cure every day, but I'll settle for a manageable, chronic illness. Thanks to all of you who have joined me and my family on this journey. I will do my best to update more often and at the same time try to be more amusing and interesting :)
Much love....
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