Failing Up
I know it's been a while since I've posted an update here, but so much has been going on, and I've been trying to process my feelings and come to terms with everything, which hasn't been easy. I should have just started writing this post to begin with—writing is how I truly process things anyway. I'm not sure where to begin, so I'll start with the bottom line: I quit the trial. I feel so ashamed of myself that I couldn't finish it, that I couldn't push through and stick it out. I feel like I have failed myself, failed my readers, and failed my endo community.
I have been considering quitting the trial for a few months now. I think I've mentioned that before, but I was trying to push through, telling myself it would get better. But here's the thing: It wasn't getting better. It seemed like the longer I was on the drug, the worse I got. Cramping and stabbing pains every day. Bleeding almost every day. Days I was so tired, getting out of bed seemed impossible. And that's just me. From an outside perspective, Dave said my moods were crazy, going from really high to really low for no obvious reason. He said it was almost like I was bipolar. After he told me that, I sat back and reflected a little on how I had been feeling mentally, and I realized he was right. Hormones tend to do that to me, which is one of the reasons birth control was never a good option for managing my endo.
"I'm exhausted," I told him. "I'm tired of feeling this way. I'm tired of bleeding all the time. I'm tired of being tired." I wasn't crying, but I wanted to.
"So quit," he said. "You know I've been in support of that for a while now. I don't like watching you go through this."
"I can't just quit," I told him. "I'll let everyone down. I don't want to fail."
I'll put it this way," he said. "You didn't fail; it's just not working for you. No one's going to be upset that you're trying to make yourself feel better."
"But if I quit, where do we go from here?" I was honestly at a loss. I hung a lot of hope on this trial, and the fact that it wasn't working for me—in fact, was making me worse—was pretty devastating. "We don't have a lot options. Do we revisit the surgery? We can't afford that."
And then, we had one of those real-talk, down-and-dirty, realize-your-mortality conversations. Dave said, "Look at it this way. You're 35. Say you live to be 85. That means you have about 50 years left on this earth, and this is no way to spend two of them. It's just not." That conversation was what really put things in motion for me, because I realized he's right. I had already done my part as far as the endo research part of the trial—blood samples, tissue samples, biopsies, genetic testing. All of that was done, so I felt like I contributed at least to helping the researchers further understand endo. As far as the drug, though, it just wasn't working for me. And they needed to know that, too. As far as what to do next, Dave said, "A few months ago, I was going to take out a loan to get a motorcycle, and you were going to let me. If we're going to take out a loan for anything right now, it needs to be to get you better. The motorcycle will be there later."
Do y'all realize how supportive this man has been? I am incredibly lucky, and I know it. I read stories all the time about couples breaking up and divorcing because their partner just gets tired of dealing with all the crap that comes with endo. But somehow I ended up with this one.
Anyway, we made the decision that day to end the trial, although I didn't stop taking the medicine right then. You'll see why shortly. As far as the surgery goes, I was still nervous about it. If you recall, one of the reasons I was nervous about it was not just the cost; I also didn't feel comfortable being operated on by a doctor I had never met and who had never examined me. So, I called the clinic in Atlanta that had previously reviewed my medical records and consulted with me over the phone. I was worried they wouldn't have my records anymore, since it had been over a year and I never made the decision to have the surgery. Luckily, they still had them. I explained what happened, going all the way back to my original medical records review, my previous hesitations for the surgery, my enrollment in the trial, literally everything. I asked if Dave and I could come in and actually meet with the doctor, ask our questions, and get an idea of what the surgery would entail. They said, "Of course," and made me an appointment for the next week. At this point, I was still taking the trial meds, because I wanted to hear what the doctor in Atlanta had to say first. (They have strict social media policies, which is why I'm not saying his name or the clinic's.)
So, the next week, we made the trip to Atlanta and met with the doctor. Y'all, this was probably the best experience I have ever had with a doctor. He already had my records and my essay, so he already knew my past with endo. He asked what had been going on since then, and I told him everything. About the trial, about how I started the trial out of desperation, about how it was making me feel, about how exhausted I was with everything. I feel like I rambled on forever, but here's the thing, HE LISTENED TO ME. It has been so long since a doctor has actually listened and not written off my concerns as, "Oh, it's just because of the endometriosis," and sent me on my way with a prescription for birth control that I just said I didn't want. Then, he did an exam. Let me tell you, that exam hurt like hell. It hurt because he was trying to pinpoint exactly where the pain was coming from. But here's another thing, in all my years of having the endo diagnosis, no one has ever tried to do that, which is ridiculous and blows my mind. So, anyway, as it turns out, while this doctor does think that endo is a problem, he thinks a worse problem for me is adenomyosis, which is basically endometriosis but in your uterus. Turns out that's where most of my pain, and the worst of my pain, comes from. Unfortunately, the only way to officially diagnose adenomyosis is post-hysterectomy in the lab. Fortunately, he doesn't think that is the right treatment for me at this time. There is a different procedure he can do that won't cure the adenomyosis but will stop the pain. There is a nerve they can cut that will prevent the pain signals from going to your brain. And the nerve is not in a place where it's able to regenerate itself. Yes, there are some side effects for this procedure, but if I get them, I can deal with them. Yes, I will still have adenomyosis, but I can deal with that if I don't have the pain. As far as the endo, he will do excision on that, meaning that rather than just cauterizing it (which is what most doctors do), he will actually cut it out of the tissue so the chances of it growing back are greatly reduced. He also agreed with Dave that the trial was bad for me.
We didn't schedule the surgery that day. Rather, we left the clinic with a lot of information to process and a lot of hope, uncertainty, and fear. We felt hopeful that we actually had some concrete answers, uncertainty about how to pay for it, fear of having such a major surgery. So, we went home to talk about it, do some soul searching, and look at our financing options. Ultimately, after about three days, we decided to move forward with the surgery. That day, I officially quit taking the trial meds.
I've been off the meds for about three weeks now, and Dave says he can already tell my mood is leveling out. Even so, coming off the drug has been almost as hard as being on it. My moods are leveling out but still unpredictable. Yesterday, I felt depressed all day. No real reason. I just woke up feeling that way and couldn't shake it. Today, I'm fine. I've still been in a lot pain, but I haven't been bleeding, so that's good. At my exit appointment, the doctor really grilled me. I almost felt like it was my fault the drug hadn't been successful. She kept asking me why I thought my pain was worse, why I thought the drug was making me worse, questioning my timeline about when things started to go downhill—I mean, I know that's her job, that she has to ask people these kinds of questions when they exit because they have to write a report to go in my file, but her tone of voice? That was on her. There was no need to make me feel that way. I went along with it at first, seriously questioning myself, but then, I thought, You know what? It just didn't work for me. I probably won't ever see this doctor again. And I laid it all out on the table. Yes, things have gotten worse since I've been on the drug. How do I know? I started the drug in January and have been feeling progressively worse since then. No, I am not taking anything else that could be interfering with it. I've done what I'm supposed to do. Why don't I like the drug? Because it makes me feel bad. What do I mean I'm exhausted? I mean I'm tired of feeling like crap all the time. Constantly feeling bad takes its toll. The nurse thought the doctor was a little out of line, too. She apologized, said they needed the info but there was no need for that. I could tell she felt bad.
Anyway, it's over. I'm done. My surgery is in December, and I'm not going to lie, I'm scared. This will be the most major surgery I've ever had, and my first time staying in a hospital overnight. I'm still dealing with feeling like a failure. Even though I know leaving the trial is the best thing for me and is in my best interest, I still somehow feel like I've failed. I'll come around, I guess. Maybe some of you will think I failed, too. That's okay. I've stayed bad situations in the past because I didn't want to feel like a failure, and a good friend recently said to me, "It seems to me like it's a huge improvement that you knew you would feel like a failure and still chose what was best for you this time. So maybe while you 'failed' to complete the study, you succeeded in making the best choice for you and your marriage." I'm trying to look at it from that perspective. (P.S., you know who you are. Thank you for the insight and for letting me hash this out.)
Even though I'm done with the trial, I'm going to keep up with this blog and keep documenting the endo life, just as "Robyn" now. Test Subject 521-002 will always be part of me, but she is no longer me.
Way too many people have this disease for it to remain a medical mystery. We need answers, and we need visibility. Maybe I can help with the visibility part.
Until next time.
Yours,
Robyn
I have been considering quitting the trial for a few months now. I think I've mentioned that before, but I was trying to push through, telling myself it would get better. But here's the thing: It wasn't getting better. It seemed like the longer I was on the drug, the worse I got. Cramping and stabbing pains every day. Bleeding almost every day. Days I was so tired, getting out of bed seemed impossible. And that's just me. From an outside perspective, Dave said my moods were crazy, going from really high to really low for no obvious reason. He said it was almost like I was bipolar. After he told me that, I sat back and reflected a little on how I had been feeling mentally, and I realized he was right. Hormones tend to do that to me, which is one of the reasons birth control was never a good option for managing my endo.
"I'm exhausted," I told him. "I'm tired of feeling this way. I'm tired of bleeding all the time. I'm tired of being tired." I wasn't crying, but I wanted to.
"So quit," he said. "You know I've been in support of that for a while now. I don't like watching you go through this."
"I can't just quit," I told him. "I'll let everyone down. I don't want to fail."
I'll put it this way," he said. "You didn't fail; it's just not working for you. No one's going to be upset that you're trying to make yourself feel better."
"But if I quit, where do we go from here?" I was honestly at a loss. I hung a lot of hope on this trial, and the fact that it wasn't working for me—in fact, was making me worse—was pretty devastating. "We don't have a lot options. Do we revisit the surgery? We can't afford that."
And then, we had one of those real-talk, down-and-dirty, realize-your-mortality conversations. Dave said, "Look at it this way. You're 35. Say you live to be 85. That means you have about 50 years left on this earth, and this is no way to spend two of them. It's just not." That conversation was what really put things in motion for me, because I realized he's right. I had already done my part as far as the endo research part of the trial—blood samples, tissue samples, biopsies, genetic testing. All of that was done, so I felt like I contributed at least to helping the researchers further understand endo. As far as the drug, though, it just wasn't working for me. And they needed to know that, too. As far as what to do next, Dave said, "A few months ago, I was going to take out a loan to get a motorcycle, and you were going to let me. If we're going to take out a loan for anything right now, it needs to be to get you better. The motorcycle will be there later."
Do y'all realize how supportive this man has been? I am incredibly lucky, and I know it. I read stories all the time about couples breaking up and divorcing because their partner just gets tired of dealing with all the crap that comes with endo. But somehow I ended up with this one.
Anyway, we made the decision that day to end the trial, although I didn't stop taking the medicine right then. You'll see why shortly. As far as the surgery goes, I was still nervous about it. If you recall, one of the reasons I was nervous about it was not just the cost; I also didn't feel comfortable being operated on by a doctor I had never met and who had never examined me. So, I called the clinic in Atlanta that had previously reviewed my medical records and consulted with me over the phone. I was worried they wouldn't have my records anymore, since it had been over a year and I never made the decision to have the surgery. Luckily, they still had them. I explained what happened, going all the way back to my original medical records review, my previous hesitations for the surgery, my enrollment in the trial, literally everything. I asked if Dave and I could come in and actually meet with the doctor, ask our questions, and get an idea of what the surgery would entail. They said, "Of course," and made me an appointment for the next week. At this point, I was still taking the trial meds, because I wanted to hear what the doctor in Atlanta had to say first. (They have strict social media policies, which is why I'm not saying his name or the clinic's.)
So, the next week, we made the trip to Atlanta and met with the doctor. Y'all, this was probably the best experience I have ever had with a doctor. He already had my records and my essay, so he already knew my past with endo. He asked what had been going on since then, and I told him everything. About the trial, about how I started the trial out of desperation, about how it was making me feel, about how exhausted I was with everything. I feel like I rambled on forever, but here's the thing, HE LISTENED TO ME. It has been so long since a doctor has actually listened and not written off my concerns as, "Oh, it's just because of the endometriosis," and sent me on my way with a prescription for birth control that I just said I didn't want. Then, he did an exam. Let me tell you, that exam hurt like hell. It hurt because he was trying to pinpoint exactly where the pain was coming from. But here's another thing, in all my years of having the endo diagnosis, no one has ever tried to do that, which is ridiculous and blows my mind. So, anyway, as it turns out, while this doctor does think that endo is a problem, he thinks a worse problem for me is adenomyosis, which is basically endometriosis but in your uterus. Turns out that's where most of my pain, and the worst of my pain, comes from. Unfortunately, the only way to officially diagnose adenomyosis is post-hysterectomy in the lab. Fortunately, he doesn't think that is the right treatment for me at this time. There is a different procedure he can do that won't cure the adenomyosis but will stop the pain. There is a nerve they can cut that will prevent the pain signals from going to your brain. And the nerve is not in a place where it's able to regenerate itself. Yes, there are some side effects for this procedure, but if I get them, I can deal with them. Yes, I will still have adenomyosis, but I can deal with that if I don't have the pain. As far as the endo, he will do excision on that, meaning that rather than just cauterizing it (which is what most doctors do), he will actually cut it out of the tissue so the chances of it growing back are greatly reduced. He also agreed with Dave that the trial was bad for me.
We didn't schedule the surgery that day. Rather, we left the clinic with a lot of information to process and a lot of hope, uncertainty, and fear. We felt hopeful that we actually had some concrete answers, uncertainty about how to pay for it, fear of having such a major surgery. So, we went home to talk about it, do some soul searching, and look at our financing options. Ultimately, after about three days, we decided to move forward with the surgery. That day, I officially quit taking the trial meds.
I've been off the meds for about three weeks now, and Dave says he can already tell my mood is leveling out. Even so, coming off the drug has been almost as hard as being on it. My moods are leveling out but still unpredictable. Yesterday, I felt depressed all day. No real reason. I just woke up feeling that way and couldn't shake it. Today, I'm fine. I've still been in a lot pain, but I haven't been bleeding, so that's good. At my exit appointment, the doctor really grilled me. I almost felt like it was my fault the drug hadn't been successful. She kept asking me why I thought my pain was worse, why I thought the drug was making me worse, questioning my timeline about when things started to go downhill—I mean, I know that's her job, that she has to ask people these kinds of questions when they exit because they have to write a report to go in my file, but her tone of voice? That was on her. There was no need to make me feel that way. I went along with it at first, seriously questioning myself, but then, I thought, You know what? It just didn't work for me. I probably won't ever see this doctor again. And I laid it all out on the table. Yes, things have gotten worse since I've been on the drug. How do I know? I started the drug in January and have been feeling progressively worse since then. No, I am not taking anything else that could be interfering with it. I've done what I'm supposed to do. Why don't I like the drug? Because it makes me feel bad. What do I mean I'm exhausted? I mean I'm tired of feeling like crap all the time. Constantly feeling bad takes its toll. The nurse thought the doctor was a little out of line, too. She apologized, said they needed the info but there was no need for that. I could tell she felt bad.
Anyway, it's over. I'm done. My surgery is in December, and I'm not going to lie, I'm scared. This will be the most major surgery I've ever had, and my first time staying in a hospital overnight. I'm still dealing with feeling like a failure. Even though I know leaving the trial is the best thing for me and is in my best interest, I still somehow feel like I've failed. I'll come around, I guess. Maybe some of you will think I failed, too. That's okay. I've stayed bad situations in the past because I didn't want to feel like a failure, and a good friend recently said to me, "It seems to me like it's a huge improvement that you knew you would feel like a failure and still chose what was best for you this time. So maybe while you 'failed' to complete the study, you succeeded in making the best choice for you and your marriage." I'm trying to look at it from that perspective. (P.S., you know who you are. Thank you for the insight and for letting me hash this out.)
Even though I'm done with the trial, I'm going to keep up with this blog and keep documenting the endo life, just as "Robyn" now. Test Subject 521-002 will always be part of me, but she is no longer me.
Way too many people have this disease for it to remain a medical mystery. We need answers, and we need visibility. Maybe I can help with the visibility part.
Until next time.
Yours,
Robyn
It's Bea. You know I love you forever and always. And you are never ever a failure for being true to yourself and what you need. The strongest thing you can do is advocate for yourself. I know I learned that just in time to save my life. ❤
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