I was really hoping that last Wednesdays appointment with the Oncologist would answer so many of my questions. Instead, I am left with nothing but more questions, and some very big decisions to make.
He told me that I have two types of cancer, with one subtype. I have Mucinous Carcinoma and Adenocarcinoma with a subtype of Bronchioalveolar Carcinoma. What a mouthful. The Adenocarcinoma is a typical lung cancer called non small cell, and its considered to be slow growing. The Mucinous Carcinoma is a rare cancer that is also slow growing and slow to spread. The Bronchioalveolar Carcinoma is again slow growing and slow to spread, and is the most typical cancer found in 1) Never-smokers and non-smokers (after 6.5+ years of not smoking that's what I am considered) 2) Women and 3) Younger adults. I get 3 out of 3 on that one! So the good things are that none of the cancers found in my lung are fast or aggressive types of cancer. Also a good sign, there was no finding of cancerous cells in my lymph nodes when they did the biopsies while removing half my lung.
However. This does not mean that some tiny little cells didn't decided to abort and go on a journey through my blood/lymph system to set up shop in some other part of my body. They didn't see anything else on the PET scan, but the PET scan doesn't 1) Pick up all kinds of cancer and 2) It cant see individual cells, the cancer has to be a certain size to be picked up. So, I could in theory get a clean bill of health right now, but still have cancer lurking somewhere in my body, waiting for the right time to start growing. The most common places for lung cancer to spread are the liver, adrenal glands, bones and the brain. Not places you want to mess around with, for sure.
Problem is, there is no way to tell if it has spread. There is no blood test for lung cancer. We haven't seen any tumors anywhere else, but again, that doesn't mean the cells aren't out there. I cant have repeated CT scans to check for spreading because the radiation is so high in them, that they actually cause cancer. So the only options for testing are chest xrays for the next 5 years to make sure the lung cancer doesn't come back.
So on to Chemo. He says this is a "very grey area" in my case. He said the same thing that my surgeon said, I have a 70% chance that it will NEVER come back, and a 30% chance that it WILL come back. I believe this only applies to cancer of the lung. If I do chemo, it will maybe up my odds to 77%/23%. Problem is, we don't know if I need the chemo. I could do it, and actually have cancer cells in my body for it to kill. Or I could do it and not have even one tiny bit of cancer in me, making it all for nothing. Or I could not do it, continue to get chest xrays, and monitor myself that way.
To make things more complicated, if I do the chemo, its for 16 weeks. 4 months out of my life. On one hand I think - hey, its only 4 months out of the rest of my life. On the other hand, I missed so much in the last 3 weeks of being unable to do anything, do I really want to potentially be wasting 4 more months? I would take 2 intravenous chemo drugs, on a 28 day cycle. One drug once a week for the first two weeks, and then a break for two weeks until the cycle started again. The other drug for every week of the 16 weeks. He said there isn't a risk of me losing my hair, but that I would have a risk of being infertile, going into early menopause, have damage to my kidneys, and a few other less likely side effects. He said the the main 3 side effects to worry about would be nausea, fatigue and neuropathy (which could be permanent). He said he would probably be able to keep the nausea under control with medicine, but that there was nothing he could do about the fatigue. He said I would "feel like crap". They sent me home with this huge notebook full of information and the section on fatigue says "Fatigue is a common side effect of chemotherapy. It can last a few weeks or even for several months. Fatigue can interfere with your life and simple tasks such as shaving or brushing your teeth may seem impossible to do". Wow. I don't know how I would handle two kids at home feeling like that.
The doctor told me that he was going to look into another chemo drug that is really effective for Bronchioalveolar Carcinoma in people who have active cancer. He said he wasn't going to prescribe it to me without checking some things out because it has never been used as a preventative drug before, so he has no idea if it would even be effective in my case. He also said he was going to look at some other case studies done on the effectiveness of chemo after surgery with the kind of cancer that I have. He said that with all the studies out there, he would be lucky to find 5 cases like mine, because its so rare. Its frustrating, I wish that if I had to have cancer, it could have been a simple kind that they could have given me a black or white answer on what I should do now. He did say that he would lean towards NOT doing the chemo, because there is no clear reason for it. I am supposed to hear back from him today to see if he has any more information.
When I first came home from the appointment, I told Matthew I was going to go for it. Do the chemo, and just accept the side effects, because I wanted the best chance possible to make sure this didn't return. I asked Matthew what he would do in my situation, and he surprised me by saying he wouldn't do it. I asked why and he said it was because he is more of an optimist than me...he would have faith that if all the doctors are saying its gone, and the chance of it having spread is small, that he would believe them, and just live his life. I talked to someone else that day who's opinion I also really trust, and she said the same thing as Matthew. She said that she would feel like if it was meant to come back it would, and if it wasn't, it wouldn't and that she would also want to get on with her life. I also talked to a couple people who said that I should go for the chemo, just to have the best chance I could. Its such a hard choice to make for me, because I really struggle with finding the faith to believe that I am cured. I am a person who worries a lot by nature. I worry about getting in a car wreck, a house fire, the kids getting kidnapped, something happening to Matthew....you name it, I have worried about it. In this case I know that the obsessive worry does me no favors, and depending on how out there you want to get...I even feel like the worrying can MAKE me sick. So while I am struggling with the decision of whether or not to do the chemo, I am also struggling with my ability to believe in myself and my doctors. Is the cancer gone? I don't know. I feel like it is, I really do, but at the same time....I cant stop the little thoughts that manage to sneak in and undermine that feeling by introducing a bunch of what ifs. What if its already spread to my bones? What if its living in my liver and isn't big enough to see yet? Ironically, I am not one bit concerned that its going to come back in my lung. So what do I do? Do I lose 4 months of my life doing a chemo treatment that may not even be necessary? Or do I do it on the small chance that there may be something to treat?
Right now, today, I have decided not to do the chemo. There are a number of reasons for this, some selfish. I don't want to be sick for 4 more months for nothing. This is the time of year when we have a lot going on...planting the garden, berry picking with the kids, the adventures of summer, Easter egg hunts, the fourth of July. I don't want to miss out on all that fun with my kids. I want to enjoy my life, to get back to living it, and to leave cancer in my past. I will take with me the lessons I have learned from it, and hopefully that's the only reason it was brought into my life. I cant let cancer rule my life...I cant be scared of it, I cant live my life with it hanging over my head, I cant let it define who I am or how I live. I want to enjoy all the time I have here on earth, whether that be 8 months or 80 years. No, I never want to leave my family. I never want to not be with my kids and Matthew. But Matthew told me something once and it really stuck with me. He said that none of us are guaranteed our time here. I could beat cancer just to end up dying in a car wreck. As morbid as that sounds, its true. I have realized the importance of cherishing each day, and I wont let cancer take that joy I have found away from me, in the form of worry and fear. I choose today to find my faith, to live my life, to enjoy and cherish and love my children, to spend wonderful moments with my amazing husband, and to not put off until tomorrow what I could do today. I choose to spend more time with the people in my life that mean so much to me, to teach my children and learn from them, and to truly love my life. I choose today to live my life with no regrets, with a smile on my face, and peace in my heart.
He told me that I have two types of cancer, with one subtype. I have Mucinous Carcinoma and Adenocarcinoma with a subtype of Bronchioalveolar Carcinoma. What a mouthful. The Adenocarcinoma is a typical lung cancer called non small cell, and its considered to be slow growing. The Mucinous Carcinoma is a rare cancer that is also slow growing and slow to spread. The Bronchioalveolar Carcinoma is again slow growing and slow to spread, and is the most typical cancer found in 1) Never-smokers and non-smokers (after 6.5+ years of not smoking that's what I am considered) 2) Women and 3) Younger adults. I get 3 out of 3 on that one! So the good things are that none of the cancers found in my lung are fast or aggressive types of cancer. Also a good sign, there was no finding of cancerous cells in my lymph nodes when they did the biopsies while removing half my lung.
However. This does not mean that some tiny little cells didn't decided to abort and go on a journey through my blood/lymph system to set up shop in some other part of my body. They didn't see anything else on the PET scan, but the PET scan doesn't 1) Pick up all kinds of cancer and 2) It cant see individual cells, the cancer has to be a certain size to be picked up. So, I could in theory get a clean bill of health right now, but still have cancer lurking somewhere in my body, waiting for the right time to start growing. The most common places for lung cancer to spread are the liver, adrenal glands, bones and the brain. Not places you want to mess around with, for sure.
Problem is, there is no way to tell if it has spread. There is no blood test for lung cancer. We haven't seen any tumors anywhere else, but again, that doesn't mean the cells aren't out there. I cant have repeated CT scans to check for spreading because the radiation is so high in them, that they actually cause cancer. So the only options for testing are chest xrays for the next 5 years to make sure the lung cancer doesn't come back.
So on to Chemo. He says this is a "very grey area" in my case. He said the same thing that my surgeon said, I have a 70% chance that it will NEVER come back, and a 30% chance that it WILL come back. I believe this only applies to cancer of the lung. If I do chemo, it will maybe up my odds to 77%/23%. Problem is, we don't know if I need the chemo. I could do it, and actually have cancer cells in my body for it to kill. Or I could do it and not have even one tiny bit of cancer in me, making it all for nothing. Or I could not do it, continue to get chest xrays, and monitor myself that way.
To make things more complicated, if I do the chemo, its for 16 weeks. 4 months out of my life. On one hand I think - hey, its only 4 months out of the rest of my life. On the other hand, I missed so much in the last 3 weeks of being unable to do anything, do I really want to potentially be wasting 4 more months? I would take 2 intravenous chemo drugs, on a 28 day cycle. One drug once a week for the first two weeks, and then a break for two weeks until the cycle started again. The other drug for every week of the 16 weeks. He said there isn't a risk of me losing my hair, but that I would have a risk of being infertile, going into early menopause, have damage to my kidneys, and a few other less likely side effects. He said the the main 3 side effects to worry about would be nausea, fatigue and neuropathy (which could be permanent). He said he would probably be able to keep the nausea under control with medicine, but that there was nothing he could do about the fatigue. He said I would "feel like crap". They sent me home with this huge notebook full of information and the section on fatigue says "Fatigue is a common side effect of chemotherapy. It can last a few weeks or even for several months. Fatigue can interfere with your life and simple tasks such as shaving or brushing your teeth may seem impossible to do". Wow. I don't know how I would handle two kids at home feeling like that.
The doctor told me that he was going to look into another chemo drug that is really effective for Bronchioalveolar Carcinoma in people who have active cancer. He said he wasn't going to prescribe it to me without checking some things out because it has never been used as a preventative drug before, so he has no idea if it would even be effective in my case. He also said he was going to look at some other case studies done on the effectiveness of chemo after surgery with the kind of cancer that I have. He said that with all the studies out there, he would be lucky to find 5 cases like mine, because its so rare. Its frustrating, I wish that if I had to have cancer, it could have been a simple kind that they could have given me a black or white answer on what I should do now. He did say that he would lean towards NOT doing the chemo, because there is no clear reason for it. I am supposed to hear back from him today to see if he has any more information.
When I first came home from the appointment, I told Matthew I was going to go for it. Do the chemo, and just accept the side effects, because I wanted the best chance possible to make sure this didn't return. I asked Matthew what he would do in my situation, and he surprised me by saying he wouldn't do it. I asked why and he said it was because he is more of an optimist than me...he would have faith that if all the doctors are saying its gone, and the chance of it having spread is small, that he would believe them, and just live his life. I talked to someone else that day who's opinion I also really trust, and she said the same thing as Matthew. She said that she would feel like if it was meant to come back it would, and if it wasn't, it wouldn't and that she would also want to get on with her life. I also talked to a couple people who said that I should go for the chemo, just to have the best chance I could. Its such a hard choice to make for me, because I really struggle with finding the faith to believe that I am cured. I am a person who worries a lot by nature. I worry about getting in a car wreck, a house fire, the kids getting kidnapped, something happening to Matthew....you name it, I have worried about it. In this case I know that the obsessive worry does me no favors, and depending on how out there you want to get...I even feel like the worrying can MAKE me sick. So while I am struggling with the decision of whether or not to do the chemo, I am also struggling with my ability to believe in myself and my doctors. Is the cancer gone? I don't know. I feel like it is, I really do, but at the same time....I cant stop the little thoughts that manage to sneak in and undermine that feeling by introducing a bunch of what ifs. What if its already spread to my bones? What if its living in my liver and isn't big enough to see yet? Ironically, I am not one bit concerned that its going to come back in my lung. So what do I do? Do I lose 4 months of my life doing a chemo treatment that may not even be necessary? Or do I do it on the small chance that there may be something to treat?
Right now, today, I have decided not to do the chemo. There are a number of reasons for this, some selfish. I don't want to be sick for 4 more months for nothing. This is the time of year when we have a lot going on...planting the garden, berry picking with the kids, the adventures of summer, Easter egg hunts, the fourth of July. I don't want to miss out on all that fun with my kids. I want to enjoy my life, to get back to living it, and to leave cancer in my past. I will take with me the lessons I have learned from it, and hopefully that's the only reason it was brought into my life. I cant let cancer rule my life...I cant be scared of it, I cant live my life with it hanging over my head, I cant let it define who I am or how I live. I want to enjoy all the time I have here on earth, whether that be 8 months or 80 years. No, I never want to leave my family. I never want to not be with my kids and Matthew. But Matthew told me something once and it really stuck with me. He said that none of us are guaranteed our time here. I could beat cancer just to end up dying in a car wreck. As morbid as that sounds, its true. I have realized the importance of cherishing each day, and I wont let cancer take that joy I have found away from me, in the form of worry and fear. I choose today to find my faith, to live my life, to enjoy and cherish and love my children, to spend wonderful moments with my amazing husband, and to not put off until tomorrow what I could do today. I choose to spend more time with the people in my life that mean so much to me, to teach my children and learn from them, and to truly love my life. I choose today to live my life with no regrets, with a smile on my face, and peace in my heart.