I realize the importance of research studies in the medical field and I am a big supporter of them. During my treatment for leukemia I participated in a lot of them. However, I have recently received a letter asking for my participation in another one and I keep going back and forth on what to do.
What is the study about?
The University of Minnesota in the Twin Cities, in cooperation with City of Hope in California, is conducting a two-year study for cancer survivors who received radiation therapy to the chest to study if the low dose of the study drug reduces the risk for Breast Cancer in those at risk due to radiation therapy. Studies have found that "young women received radiation that included the chest area have anywhere from 2 times up to 20 to 55-times higher risk of developing breast cancer than the average women"(this information was taken from the packet that was sent to me in the mail).
As a young adult that received total body radiation therapy in preparation for a stem cell transplant after my leukemia relapsed, I am a candidate for this study. Since I am mainly alive because other people took part in studies such as this, maybe even riskier, I have a hard time not participating since it can benefit many people in the future.
So why am I debating whether to take part or not? The study is taking place at the University of Minnesota in Minneapolis. As a current resident of Fargo, ND, that is quite the drive to make, which would need to be done several times throughout a 2 year basis. The Twin Cities is no stranger to me. For over a 5 year time span I, along with my mom for the most part and on occasion my step-father or aunt, made hundreds of trips into the big city. When I was first diagnosed with cancer I lived in a small town, Glenwood, MN, that most people only knew because of the huge beautiful Lake Minnewaska that spanned between two towns, Glenwood and Starbuck and the big summer event Wateramma. This is about 2 hours away from Minneapolis (on a good day's drive). For treatments and whenever there were complications while I was home, which seemed to happen frequently, Mom and I had to make this trip together, sometimes in separate vehicles with me in an ambulance and her trailing behind. So we both grew well aware of the cost of having to go down and back, which was usually around $100 - $150, give or take some, because of the cots of gas, parking, and food.
Now I live even further away and even though my husband and I have pretty good jobs, we still have a lot of debt, especially student loans that eat up much of our income. Also, due to current unforeseen circumstances arising, which is a whole new story and ridiculousness on its own, we have been trying to really reign back extra spending, especially since we are both getting really sick of apartment living and are more than ready to find a house to purchase so we can have our own space to do what we want.
However, even after all the mumbo jumbo above, I also had to think about other parts of the study and not just the money side of it. Ever since my stem cell transplant nine years ago my body has decided that it hates everything. I wish that was a dramatization but it really is not. I seem to develop an allergic reaction of various sorts to every drug that I take. We discovered this not long after the transplant when my body started rejecting one of the big anti-rejection drugs they like to give on top of every antibiotic. Usually when there was a possible side effect from the drug that should only affect a small number of people, it would happen to me. I was just that lucky, still am I guess. I even developed side effects that they were unaware of for some of the medications I received. The doctors and some nurses often said that I was really good at keeping everyone on their toes.
Thus, I looked through the possible side effects and thought about how they would affect me and make me feel. Would the side effects cause issues with my work schedule? Would it take away the days when I actually feel well? Even though my stem cell transplant was nine years ago I still have lingering side effects from all of the treatment and complications that occurred during this time. A story for another time.
Any who, after reading the papers a hundred times and thinking through expenses and everything and discussing it with the important people in my life, I decided against taking part in the study. Was this ultimately the right thing to do? Who could ever really know that? However, receiving that study made me more aware that I need to be proactive about my health and make sure I am going to check ups and really watching for those risk factors that chemotherapy and full body radiation bring to the table. I will have to start overcoming my discomfort of going to the doctor. I guess I worry every time something seems wrong, other than when I feel like I have a cold or bronchitis, which is common for me, that it will be more than just an infection somewhere making me feel crummy, which is what I thought was going on when I relapsed, or when I feel an ache somewhere, which is like the first time when my hip hurt. Both of those things started out as small issues that led to such a huge life changing diagnosis. I know I am not the only cancer survivor that worries every time something does not seem right and fear that they may hear those dreadful, life altering words again. It is unfortunate that cancer treatments have such a high likelihood of causing other types of cancers to develop.
However, life continues on and you cannot waste time worrying what might come but instead enjoy the present and take things as they come. There is no preparing yourself with potentially hearing those words again. Even if you do they will catch you off guard as if you had never been familiar with those words before. Of course, that is all easier said than done and sometimes a little bit of worry is important since it will push for you to find out what is really going on. Not letting that worry take ahold of your life is the important part to remember and a part that I am always working on.
Lotza love!
What is the study about?
The University of Minnesota in the Twin Cities, in cooperation with City of Hope in California, is conducting a two-year study for cancer survivors who received radiation therapy to the chest to study if the low dose of the study drug reduces the risk for Breast Cancer in those at risk due to radiation therapy. Studies have found that "young women received radiation that included the chest area have anywhere from 2 times up to 20 to 55-times higher risk of developing breast cancer than the average women"(this information was taken from the packet that was sent to me in the mail).
As a young adult that received total body radiation therapy in preparation for a stem cell transplant after my leukemia relapsed, I am a candidate for this study. Since I am mainly alive because other people took part in studies such as this, maybe even riskier, I have a hard time not participating since it can benefit many people in the future.
So why am I debating whether to take part or not? The study is taking place at the University of Minnesota in Minneapolis. As a current resident of Fargo, ND, that is quite the drive to make, which would need to be done several times throughout a 2 year basis. The Twin Cities is no stranger to me. For over a 5 year time span I, along with my mom for the most part and on occasion my step-father or aunt, made hundreds of trips into the big city. When I was first diagnosed with cancer I lived in a small town, Glenwood, MN, that most people only knew because of the huge beautiful Lake Minnewaska that spanned between two towns, Glenwood and Starbuck and the big summer event Wateramma. This is about 2 hours away from Minneapolis (on a good day's drive). For treatments and whenever there were complications while I was home, which seemed to happen frequently, Mom and I had to make this trip together, sometimes in separate vehicles with me in an ambulance and her trailing behind. So we both grew well aware of the cost of having to go down and back, which was usually around $100 - $150, give or take some, because of the cots of gas, parking, and food.
Now I live even further away and even though my husband and I have pretty good jobs, we still have a lot of debt, especially student loans that eat up much of our income. Also, due to current unforeseen circumstances arising, which is a whole new story and ridiculousness on its own, we have been trying to really reign back extra spending, especially since we are both getting really sick of apartment living and are more than ready to find a house to purchase so we can have our own space to do what we want.
However, even after all the mumbo jumbo above, I also had to think about other parts of the study and not just the money side of it. Ever since my stem cell transplant nine years ago my body has decided that it hates everything. I wish that was a dramatization but it really is not. I seem to develop an allergic reaction of various sorts to every drug that I take. We discovered this not long after the transplant when my body started rejecting one of the big anti-rejection drugs they like to give on top of every antibiotic. Usually when there was a possible side effect from the drug that should only affect a small number of people, it would happen to me. I was just that lucky, still am I guess. I even developed side effects that they were unaware of for some of the medications I received. The doctors and some nurses often said that I was really good at keeping everyone on their toes.
Thus, I looked through the possible side effects and thought about how they would affect me and make me feel. Would the side effects cause issues with my work schedule? Would it take away the days when I actually feel well? Even though my stem cell transplant was nine years ago I still have lingering side effects from all of the treatment and complications that occurred during this time. A story for another time.
Any who, after reading the papers a hundred times and thinking through expenses and everything and discussing it with the important people in my life, I decided against taking part in the study. Was this ultimately the right thing to do? Who could ever really know that? However, receiving that study made me more aware that I need to be proactive about my health and make sure I am going to check ups and really watching for those risk factors that chemotherapy and full body radiation bring to the table. I will have to start overcoming my discomfort of going to the doctor. I guess I worry every time something seems wrong, other than when I feel like I have a cold or bronchitis, which is common for me, that it will be more than just an infection somewhere making me feel crummy, which is what I thought was going on when I relapsed, or when I feel an ache somewhere, which is like the first time when my hip hurt. Both of those things started out as small issues that led to such a huge life changing diagnosis. I know I am not the only cancer survivor that worries every time something does not seem right and fear that they may hear those dreadful, life altering words again. It is unfortunate that cancer treatments have such a high likelihood of causing other types of cancers to develop.
However, life continues on and you cannot waste time worrying what might come but instead enjoy the present and take things as they come. There is no preparing yourself with potentially hearing those words again. Even if you do they will catch you off guard as if you had never been familiar with those words before. Of course, that is all easier said than done and sometimes a little bit of worry is important since it will push for you to find out what is really going on. Not letting that worry take ahold of your life is the important part to remember and a part that I am always working on.
Lotza love!
