It's only about 3 inches tall and light brown. It has my name on it and unlimited refills. And I've never been so scared of anything in my life. I've put off starting Tamoxifen for exactly two months. Though there seem to be just as many women who handle the symptoms fine as those who can't tolerate it, just the thought of popping it is making me physically sick. My head is pounding, my stomach is spinning and I feel like I might pass out. I'm so angry at myself for allowing a little white pill to have this much power over me.
I feel great. A few pounds heavier than when we started this journey, but all-in-all I am a happy girl. I'm so happy that I could easily forget that I just had cancer. I would LOVE to forget it. What I wouldn't give to take my painful, rock-hard saline filled sacks and move on. It will never be that way, though. Once cancer has touched you, you spend the rest of your life chasing it.
I experienced some of this after Daddy died- some fear and paranoia- so you would think I would be able to handle this with more grace. I was okay until my last visit to the oncologist. She explained that my 8% risk of recurrence is a risk of what the cancer world calls "mets." That there is some little breast cancer cell floating around in my body trying to attach itself to something else. There's an 8% chance that will happen, and if it happens I will die. I'm scared shitless.
I'm a Christian, so it's not so much that I'm afraid of dying. It's that I can't bear the thought of missing any of my girls lives and not being here to help them raise their babies. Then there are the thoughts of seeing what Daddy went through and how I would just about rather jump from the top of a tall building than subject anyone I love to that. Yes, there's a 92% chance that it will never happen, but the oncologist also said that there was less than a 1% chance of this happening to me- and it happened. None of us is holding the same hand in this card game.
When I heard the doctor's explanation I felt bad for not starting the meds sooner. I pictured this little white pill running around in my body chasing cancer cells. I should be thankful that I have it, and I am, but I know that as soon as I pop that first pill I'm on my way to a decade- A DECADE- of chasing cancer. Every night before bed I'll have a little white reminder that I'd better do this right. I know I can't be alone because I read a study that said that a large percentage of women stop taking it early because they feel great and the pill reminds them of the cancer. Of course those women have a higher recurrence rate. I don't want to be a part of anymore statistics.
Sometimes, like tonight, I feel incredibly alone. I know I'm not. I had an amazing team rallying around me over the last few months. But now the big surgery's over. The cancer's "out." I appear to have boobs. I didn't lose my hair. To most of the world, I'm pretty much okay. I don't want or deserve a pity party because I do feel wonderful considering the circumstances, but sometimes this is still a lonely club. Nobody can take the pill for me. Nobody will understand my anger and discouragement if it makes me feel like shit, nor will they fully understand my relief if it doesn't. I'm just in limbo now. That young mom that just had a double mastectomy, but they got it all and she's all better now. Only she's not. Not really.
Showing posts with label Tamoxifen. Show all posts
Showing posts with label Tamoxifen. Show all posts
Sunday, December 1, 2013
Thursday, October 24, 2013
Instaboob guilt
I was so touched this week when one of the readers of this blog posted to ask me what the results were at my doctor's visit. Usually I treat this blog somewhat as a diary. My only hope being that someday, some other terrified 34-year-old mother of three whose world is crashing down will find it and somehow find a measure of peace. I am so grateful for the kind thoughts from all of you.
So, I went to that doctor's appointment to get the results of what is called an Oncotype DX test. The test gauges your likelihood of recurrence of cancer (I believe for the next 10 years). You can score anywhere from 1-100. Anything below 18 is low risk and it has been determined that chemo is more detrimental than helpful for this group. 18-31 is intermediate risk. The rest are high risk. I thought for sure I would be intermediate risk. Up to that point, my cancer had been so strange, unusual and unpredictable. I figured it would continue to confound me and put me in a position to make a difficult decision. It surprised me. My score was a 13. You may notice I didn't say, "my score was a 13!!!"
Although it was one of the most exciting moments of my life (that absolutely required a follow-up fruity alcoholic drink, huge bowl of pasta and some retail therapy), I found myself experiencing an interesting emotion on the way home. Guilt. Lots of guilt. I couldn't think of anything except all of the amazing women (and even some men) who have not been as lucky as me. I had spent the last six weeks dreading with every fiber of my being the day my hair would begin to fall out. I cried when the girls would worry out loud about how "different" I would look. I laid awake at night trying to prepare myself for how to deal with constant nausea and still be a mommy. I stared at the checkbook wondering how we would pay the bills if I continued to miss work. Suddenly, all of that was gone. But for so many women, it's not gone. Would they resent me? Is my battle a lesser one because this? Can I even share stories with them? What else will go wrong since I have caught such a lucky break?
Four days later, I had my stitches out and one more drain. One additional drain is STILL in and is the bane of my existence, but they said that I'm healing perfectly. They were able to do my first "fill." I was warned that it would be something like the Barbie doll of the '60's that grew breasts when you pumped her arm. They used a magnet to find my port, shoved a needle in like I was a basketball and started pumping. Sure enough- Instaboob (I'm trademarking that). While it was by far the most disconcerting experience I ever hope to have, I was so thankful to have something that made me look like a woman to the outside. I will probably have to do it two or three more times before I can have my permanent implants put in. And in case you're wondering, the answer is YES. They will keep doing fills until I say "stop."
I still have waves of guilt, but going back to work has helped distract me. I would sit at home wavering back and forth between resenting my circumstances and then feeling guilty for doing it. Going back to work allowed me to return to an identity other than "cancer patient with no boobs." This week, though, I think I've reached some new stage. For reading's sake, I'll call it the, "Oh God, I'm going to die," stage. My self-analyzing says that over the last six weeks I've been in "fight" mode. Between planning and doctor's visits I didn't have time to think about the future ramifications of this disease. It only really hit me the night I tried to sleep in bed for the first time. I laid there in the dark (with no TV to distract me), and the silence reminded me that I could be dead. One change in my recent circumstances- a cancelled doctor's appointment, an inexperienced medical intern doing the breast exams, a less concerned midwife- I would be one of those even rarer cases. The ones that make you shake your head and hide from the fear that it could be you.
Nighttime is when numbers creep into my head. I start analyzing all of the percentages (95% estrogen receptor positive, 82% progesterone receptor positive, 13 Oncotype, 8% recurrence) and then I start remembering Daddy. I have these flashbacks of Daddy in his last two weeks. Bloated, yellow and distant. Then in his last two days- unable to walk and finally unable to speak. I become terrified that it will be me. I knew before that it COULD happen. We all know that, in theory, our bodies can turn on us. For those of us who have seen it, we are even more acutely aware of that possibility. But now it has actually happened. Estrogen made me grow a tumor (an additional 5 cm. of it still in my duct) that could have killed me. It could come back. It could have spread without us knowing it. I remember asking the chemo nurses how they avoid becoming paranoid. They told me that every day one of them "has cancer." So will I live in fear of cancer for the rest of my life? My body turned on me once- will it do it again?
Now I have been given several decisions to make regarding my future treatment. My loyal oncologist who treated my father recommended (without question or debate) 5 or maybe 10 years of Tamoxifen, which he claims 90% of women "tolerate well." He wants me to start it "yesterday" and have a hysterectomy before the end of the year. Primarily he wants my ovaries out, but after five years on Tamoxifen you are at an increased risk of uterine cancer, so he said they "might as well" take out my uterus while they're in there. My oncological surgeon's PA was shocked by this and asked me to get a second opinion. I met again with the humorless German female oncologist who first treated me. She gave me two options: Tamoxifen for 10 years or an oophorectomy (removal of my ovaries) followed by 5 years of Arimidex (which she claimed is "better" than Tamoxifen). She said that the risk of uterine cancer from Tamoxifen is 1 in 1000 and none of them have been fatal, so she would not recommend that more extreme surgery and said that it has a four week recovery time (compared to 2-3 days with the oophorectomy). She told me she would choose the second option if it were her.
Some people might appreciate these options. The problem is that it gives me the illusion that I have some control over my ultimate fate. I feel like I'm choosing between not doing enough and getting cancer again (Tamoxifen alone) or going overboard and becoming a menopausal monster at age 34 (the oophorectomy will immediately put me into menopause).
As a Christian, I know that my future is in God's hands, but He has now put this decision in front of me- and it's a life or death decision. So I have been researching until my fingers bleed, hoping that something or someone will make the answers clear to me. I have given myself permission to wait and think for just a little while, but waiting even a little while scares me. Because I am premenopausal I think I have decided that I will try Tamoxifen first instead of Arimidex, but I will wait until I have adjusted to my "new normal." I want to be feeling my best and be prepared for whatever side effects may head my way. I know that, ultimately, I must have the surgery to minimize my risk. If I don't, and something comes back, I will never forgive myself. I'm just not ready to commit, though. I've lost so much of what makes me a woman already- I'm just not ready to give anything else up quite yet. I'll decide and commit before Christmas and I think I'll have the surgery by my birthday in May. I wrote it down so I'm committed. I'm also writing this down- I'm going to run a half marathon in 2014. It's something that I have said for years I would never, and could never, do. I've never run farther than five miles. On the other hand, until last year I had never seen someone I love die. I didn't think I could survive it, but I did. Until this year, I had never had cancer invade my body. I didn't think I could make it through, but I have. I assume I'm incapable of running 13.1 miles next year, but I'm thinking maybe I could be wrong, because obviously I've been wrong before. Now I just have to prove it to myself.
So, I went to that doctor's appointment to get the results of what is called an Oncotype DX test. The test gauges your likelihood of recurrence of cancer (I believe for the next 10 years). You can score anywhere from 1-100. Anything below 18 is low risk and it has been determined that chemo is more detrimental than helpful for this group. 18-31 is intermediate risk. The rest are high risk. I thought for sure I would be intermediate risk. Up to that point, my cancer had been so strange, unusual and unpredictable. I figured it would continue to confound me and put me in a position to make a difficult decision. It surprised me. My score was a 13. You may notice I didn't say, "my score was a 13!!!"
Although it was one of the most exciting moments of my life (that absolutely required a follow-up fruity alcoholic drink, huge bowl of pasta and some retail therapy), I found myself experiencing an interesting emotion on the way home. Guilt. Lots of guilt. I couldn't think of anything except all of the amazing women (and even some men) who have not been as lucky as me. I had spent the last six weeks dreading with every fiber of my being the day my hair would begin to fall out. I cried when the girls would worry out loud about how "different" I would look. I laid awake at night trying to prepare myself for how to deal with constant nausea and still be a mommy. I stared at the checkbook wondering how we would pay the bills if I continued to miss work. Suddenly, all of that was gone. But for so many women, it's not gone. Would they resent me? Is my battle a lesser one because this? Can I even share stories with them? What else will go wrong since I have caught such a lucky break?
Four days later, I had my stitches out and one more drain. One additional drain is STILL in and is the bane of my existence, but they said that I'm healing perfectly. They were able to do my first "fill." I was warned that it would be something like the Barbie doll of the '60's that grew breasts when you pumped her arm. They used a magnet to find my port, shoved a needle in like I was a basketball and started pumping. Sure enough- Instaboob (I'm trademarking that). While it was by far the most disconcerting experience I ever hope to have, I was so thankful to have something that made me look like a woman to the outside. I will probably have to do it two or three more times before I can have my permanent implants put in. And in case you're wondering, the answer is YES. They will keep doing fills until I say "stop."
I still have waves of guilt, but going back to work has helped distract me. I would sit at home wavering back and forth between resenting my circumstances and then feeling guilty for doing it. Going back to work allowed me to return to an identity other than "cancer patient with no boobs." This week, though, I think I've reached some new stage. For reading's sake, I'll call it the, "Oh God, I'm going to die," stage. My self-analyzing says that over the last six weeks I've been in "fight" mode. Between planning and doctor's visits I didn't have time to think about the future ramifications of this disease. It only really hit me the night I tried to sleep in bed for the first time. I laid there in the dark (with no TV to distract me), and the silence reminded me that I could be dead. One change in my recent circumstances- a cancelled doctor's appointment, an inexperienced medical intern doing the breast exams, a less concerned midwife- I would be one of those even rarer cases. The ones that make you shake your head and hide from the fear that it could be you.
Nighttime is when numbers creep into my head. I start analyzing all of the percentages (95% estrogen receptor positive, 82% progesterone receptor positive, 13 Oncotype, 8% recurrence) and then I start remembering Daddy. I have these flashbacks of Daddy in his last two weeks. Bloated, yellow and distant. Then in his last two days- unable to walk and finally unable to speak. I become terrified that it will be me. I knew before that it COULD happen. We all know that, in theory, our bodies can turn on us. For those of us who have seen it, we are even more acutely aware of that possibility. But now it has actually happened. Estrogen made me grow a tumor (an additional 5 cm. of it still in my duct) that could have killed me. It could come back. It could have spread without us knowing it. I remember asking the chemo nurses how they avoid becoming paranoid. They told me that every day one of them "has cancer." So will I live in fear of cancer for the rest of my life? My body turned on me once- will it do it again?
Now I have been given several decisions to make regarding my future treatment. My loyal oncologist who treated my father recommended (without question or debate) 5 or maybe 10 years of Tamoxifen, which he claims 90% of women "tolerate well." He wants me to start it "yesterday" and have a hysterectomy before the end of the year. Primarily he wants my ovaries out, but after five years on Tamoxifen you are at an increased risk of uterine cancer, so he said they "might as well" take out my uterus while they're in there. My oncological surgeon's PA was shocked by this and asked me to get a second opinion. I met again with the humorless German female oncologist who first treated me. She gave me two options: Tamoxifen for 10 years or an oophorectomy (removal of my ovaries) followed by 5 years of Arimidex (which she claimed is "better" than Tamoxifen). She said that the risk of uterine cancer from Tamoxifen is 1 in 1000 and none of them have been fatal, so she would not recommend that more extreme surgery and said that it has a four week recovery time (compared to 2-3 days with the oophorectomy). She told me she would choose the second option if it were her.
Some people might appreciate these options. The problem is that it gives me the illusion that I have some control over my ultimate fate. I feel like I'm choosing between not doing enough and getting cancer again (Tamoxifen alone) or going overboard and becoming a menopausal monster at age 34 (the oophorectomy will immediately put me into menopause).
As a Christian, I know that my future is in God's hands, but He has now put this decision in front of me- and it's a life or death decision. So I have been researching until my fingers bleed, hoping that something or someone will make the answers clear to me. I have given myself permission to wait and think for just a little while, but waiting even a little while scares me. Because I am premenopausal I think I have decided that I will try Tamoxifen first instead of Arimidex, but I will wait until I have adjusted to my "new normal." I want to be feeling my best and be prepared for whatever side effects may head my way. I know that, ultimately, I must have the surgery to minimize my risk. If I don't, and something comes back, I will never forgive myself. I'm just not ready to commit, though. I've lost so much of what makes me a woman already- I'm just not ready to give anything else up quite yet. I'll decide and commit before Christmas and I think I'll have the surgery by my birthday in May. I wrote it down so I'm committed. I'm also writing this down- I'm going to run a half marathon in 2014. It's something that I have said for years I would never, and could never, do. I've never run farther than five miles. On the other hand, until last year I had never seen someone I love die. I didn't think I could survive it, but I did. Until this year, I had never had cancer invade my body. I didn't think I could make it through, but I have. I assume I'm incapable of running 13.1 miles next year, but I'm thinking maybe I could be wrong, because obviously I've been wrong before. Now I just have to prove it to myself.
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