I purposefully have not made this blog easy to find. If it were about something more mundane, I either wouldn't write it or I would post it on Facebook because, who cares, it wouldn't really offend anyone. But for some reason the topic of brain tumors simultaneously makes me feel unusually burdened and incredibly grateful. I don't know how I survived my surgery and all the challenges that went with it, but I also feel so lucky because I know how much worse it could have been. So, who am I to talk about my journey or my path?
If anyone finds this blog--because right now I don't think I will ever share it broadly--I want to make a big disclaimer. This is merely my story. And in some ways it was awful, and in some ways it was wonderful, and in many ways it is far from being over. I just finished reading Everybody Needs a Brain Tumor by David Koelliker. He has struggled with a brain tumor for over eight years now. He has had three brain surgeries, a clinical trial (vaccine therapy), radiation, and chemo. He didn't go into a lot of detail about his first two surgeries, but from details he shared, it sounds like his recovery from those surgeries went FAR better, or at least faster, than my surgery and recovery. He was flying, going back to work, going on a trip, walking quite a bit, etc. within weeks of his surgery. I was in bed. For months. And I wanted so badly to be out living my life--I would try and then get knocked WAY back down whenever I tried. But now David has had a third surgery and his astrocytoma has perhaps progressed into being a glioblastoma (he's not explicit about this). His third surgery left him with a 37-day hospital stay, vision loss, paralysis, and loads of therapy. I can't compare. I haven't (knowingly) lived with this for eight years yet, so that might be me too. Gosh that is scary. In eight years my youngest will only be 10. I want to be fully functional so much longer than that. I want to be his involved, active mom so much longer than that. I have plans and goals and things I want to accomplish, groups of people I want to help, trips I want to take with my husband, things I want to teach my kids. Please God, please let me live longer than that.
I have an MRI this week. I'm nervous. What if you can see my tumor on this one? What if I was wrong to stop chemo? What will this new neurooncologist be like? This week is that time when I want to start researching statistics and try to predict what my future holds. It's when I have to remind myself that any of us could die tomorrow even if we are super healthy today. It's when I have to remember that God doesn't deal in probabilities.
Part of why I wanted to write this blog was to say that the recovery from brain surgery is horrible, but that it does get better after a long time. And part of why I wanted to write this blog was to say that temozolomide,that so-called mild form of chemo they give brain cancer patients, is really pretty awful. And that it is okay to think all of that stuff is awful and horrific, because at least one person (or many people) in this whole process are going to tell you how HAPPY you should be about your situation.
But in all my realism about how awful it is to have a brain tumor, I don't want to leave anyone with the impression that I think I have it worse than anyone else. If anything, having a brain tumor has taught me how bad other people have it. I don't think you can know how horrible it is to have chemo for a year until 1) you've actually done it for a year, but a close second, 2) you've done it for a few months. You can't imagine what the drugs must do to your body until you get one infection after another and can't get out of bed. You can't imagine trying to walk after brain surgery until you feel the aggravating and excruciating pain that reverberates through your skull when you try to move faster than a snail two and a half months post-surgery.
This blog is just my taste of brain cancer and certainly not an authority on the topic and certainly not the worst that anyone suffers from this disease. It's just my story, and I guess, really written for my benefit.
Showing posts with label Emotions. Show all posts
Showing posts with label Emotions. Show all posts
Sunday, April 8, 2018
Friday, March 30, 2018
Do I Have Cancer?
This question has been so hard to answer, even if I'm only talking to myself. From a purely technical standpoint, the answer is yes. Cancer is "the disease caused by an uncontrolled division of abnormal cells in a part of the body." That was me. I had that. And the Director of the USC Norris Comprehensive Cancer Center told me if I wanted to I could rightfully call my situation cancer. And certainly without surgery my tumor was on its way to becoming far worse--first a grade III anaplastic tumor, and after that a grade IV glioblastoma. No one has a surer claim to saying they have cancer than a glioblastoma patient. It kills you. Period. But that's the problem for me--I've always thought of cancer being something that kills you or comes darn near close to killing you, and so many surgeons that I talked to in this process made my tumor sound so optimistic. Can a tumor really be optimistic? How can you say you have cancer if you have an optimistic form of cancer?
Then there is the issue of chemotherapy and radiation. Aren't those treatments required to say you have cancer? Not necessarily. My father-in-law had prostate cancer (which no one doubts or wonders about before declaring him a cancer survivor) and he did not have radiation or chemotherapy for his treatment. He didn't even have surgery. My grandfather had FOUR types of cancer and never had radiation or chemo. And then I also have to wonder about my situation because I did have four rounds of chemotherapy, and they were awful. But the oncologist kept swearing up and down how damn mild those treatments were. Mild? Why downplay it? I was dysfunctional for months because of those treatments. I know people who were treated for colon cancer and could still go to work while on chemo. I could barely get out of bed some days. But if you bring that up the doctor just calls you weak and makes you feel like you better hope and pray you never get another form of cancer (which I do, but I don't think that makes me weak, everyone should hope and pray they never get cancer).
There's the question of present versus past tense. Even if I did have cancer while my tumor was in my head, do I still have it? Am I a brain cancer patient or a brain cancer survivor? How long do you have to be "free of brain cancer" before you can call yourself a survivor? The doctors say I still have some tumor cells in me though we can't see them. How much tumor needs to be in your head for you to say that you still have the tumor? Are you still a survivor if your tumor grows back? Can your tumor really beat you, and is that an effective way of thinking about your tumor?
Part of the problem is also that I'm saying "brain cancer" or "brain tumor" when I talk about what I've been through. The brain is a huge deal. I am not at all downplaying cancer in any other part of the body. We've already established that I struggle with considering myself a cancer patient or victim or anything like that. But, if I hear someone say they had breast cancer or that they had a melanoma, I don't think twice about calling them a cancer survivor or a cancer patient. At Thanksgiving dinner a couple years ago my husband's cousins (all in their 30s-young 40s) talked about their health experiences of the past year. One was grateful to have caught and been treated for testicular cancer. Another had experienced thyroid cancer treatment. I didn't doubt their stories or experiences at all. In fact I was thinking something along the lines of, "I don't know what I'd do if that happened to me. Does this really happen to people who are so young?" But I feel like if you are in a room and you say that you had brain cancer people think you are just trying to play a trump card. That, or you should be in the morgue.
And then I feel guilty. For being alive. For not being in the hospital. For going back to work. For rocking my toddler to sleep. For walking six miles. That's not cancer. But also, to a certain extent, I'm in denial that I spent five to six months of my life (plus some months pre-surgery) just recovering. Sleeping. Resting. Closing my eyes. Staring at the wall while my brain healed. I did all those things, but it is such a far cry from where I am today. Last month's sorrows and frustrations and fatigue even seem so far away. How did life change so quickly? How did I get better?
So, here I am, a cancer survivor (for now, right?) and still a cancer patient under strict monitoring every two months. At the same time, I'm realizing how far we've come with medicine. Cancer does not mean imminent death or even future death from cancer. It's a chronic disease and millions of people live with it. In some cases, there are certainly worse outcomes, and as horrible as brain cancer has been, there are certainly other diseases that I feel would be more difficult to live with.
Then there is the issue of chemotherapy and radiation. Aren't those treatments required to say you have cancer? Not necessarily. My father-in-law had prostate cancer (which no one doubts or wonders about before declaring him a cancer survivor) and he did not have radiation or chemotherapy for his treatment. He didn't even have surgery. My grandfather had FOUR types of cancer and never had radiation or chemo. And then I also have to wonder about my situation because I did have four rounds of chemotherapy, and they were awful. But the oncologist kept swearing up and down how damn mild those treatments were. Mild? Why downplay it? I was dysfunctional for months because of those treatments. I know people who were treated for colon cancer and could still go to work while on chemo. I could barely get out of bed some days. But if you bring that up the doctor just calls you weak and makes you feel like you better hope and pray you never get another form of cancer (which I do, but I don't think that makes me weak, everyone should hope and pray they never get cancer).
There's the question of present versus past tense. Even if I did have cancer while my tumor was in my head, do I still have it? Am I a brain cancer patient or a brain cancer survivor? How long do you have to be "free of brain cancer" before you can call yourself a survivor? The doctors say I still have some tumor cells in me though we can't see them. How much tumor needs to be in your head for you to say that you still have the tumor? Are you still a survivor if your tumor grows back? Can your tumor really beat you, and is that an effective way of thinking about your tumor?
Part of the problem is also that I'm saying "brain cancer" or "brain tumor" when I talk about what I've been through. The brain is a huge deal. I am not at all downplaying cancer in any other part of the body. We've already established that I struggle with considering myself a cancer patient or victim or anything like that. But, if I hear someone say they had breast cancer or that they had a melanoma, I don't think twice about calling them a cancer survivor or a cancer patient. At Thanksgiving dinner a couple years ago my husband's cousins (all in their 30s-young 40s) talked about their health experiences of the past year. One was grateful to have caught and been treated for testicular cancer. Another had experienced thyroid cancer treatment. I didn't doubt their stories or experiences at all. In fact I was thinking something along the lines of, "I don't know what I'd do if that happened to me. Does this really happen to people who are so young?" But I feel like if you are in a room and you say that you had brain cancer people think you are just trying to play a trump card. That, or you should be in the morgue.
And then I feel guilty. For being alive. For not being in the hospital. For going back to work. For rocking my toddler to sleep. For walking six miles. That's not cancer. But also, to a certain extent, I'm in denial that I spent five to six months of my life (plus some months pre-surgery) just recovering. Sleeping. Resting. Closing my eyes. Staring at the wall while my brain healed. I did all those things, but it is such a far cry from where I am today. Last month's sorrows and frustrations and fatigue even seem so far away. How did life change so quickly? How did I get better?
So, here I am, a cancer survivor (for now, right?) and still a cancer patient under strict monitoring every two months. At the same time, I'm realizing how far we've come with medicine. Cancer does not mean imminent death or even future death from cancer. It's a chronic disease and millions of people live with it. In some cases, there are certainly worse outcomes, and as horrible as brain cancer has been, there are certainly other diseases that I feel would be more difficult to live with.
Monday, March 19, 2018
Family Who Took Care of Me
My family is close and we have always been there for each other. That was clear once again when doctors found my brain tumor. We were in Utah in July when everything unfolded, and at the time none of my immediate family was living there, but a lot of my inlaws were. Pretty immediately we made arrangements for our boys to stay with their aunt and uncle while we went down to Salt Lake City for further evaluation. My mother-in-law also helped watch the boys when we had to stay overnight. The boys had a blast. Their aunt gave them popsicles, and their grandma took them to feed the ducks. If they remember it, I know those will be fun memories.
I texted my family when I was in the first ER and told them something was wrong with my eye and I might have a blood clot. My sister was living in Idaho and hopped in the car with her roommate and started driving to Utah. They kept tabs on me to make sure they got to the right place, and they arrived at the ER in Salt Lake City minutes before we did. I quickly learned that my sister's roommate lost her grandmother (a dear family friend of ours) to breast cancer the night before. It was a touching time to feel my sister's support for me and also to extend love to her roommate and her family. My dad made arrangements to fly to Utah as soon as he could and arrived in SLC at 11pm that night. We stayed with my husband's aunt and uncle after being discharged really late, and we hoped my dad could have breakfast with us. He told me he didn't have time--he had to go back to Los Angeles for meetings, but he came to check on me and pray with me. The fact that he only had about an hour to spend with us made me feel even more loved. My mom was ready to hop on a plane as soon as we knew where we were going to be (Utah or Oregon) and help with our kids. My other sister and brother were praying for me and hoping everything would be okay.
We made it back to Oregon and things calmed down a bit, but they were going to get worse before they truly got better. The weekend before my surgery, my mom and dad came to town. My mom ended up staying for three weeks watching my kids, driving me around, taking me to the ER (again!), going with me to doctors' appointments. She was so helpful. It was comforting to have my dad visit too, though his stays were shorter so he could get back to work.
After my mom left a few weeks after my surgery, my in-laws came. My mother-in-law took my kids on walks and drove me to the grocery store so we could pick up groceries I had ordered online. I hardly remember anything from my in-laws visiting, but I remember my mother-in-law's sweetness.
A few days after my mother-in-law left, my husband's sister came to help us. She has six kids (they are older than ours, but still, she is a busy lady!), and she took the time to come help us. She made over a dozen freezer meals for us in two days--those meals fed us for months during our most difficult times. She drove me around town so I could get out of the house, paid for my hot chocolate when I realized I had forgotten my wallet and promised my son a treat, and let me sleep when I was too tired to go with her for drop offs and pick ups from school. One of the most amazing things she did was play with my kids on Sunday morning while my husband was in meetings. I was in bed, but I could tell she had patience to show them that I didn't have at the time, and she was so engaged. Six months post-surgery I am feeling much more engaged with my kids, but at the time she visited I couldn't comprehend being engaged with my kids at all!
Then my mom came again to go to my oncology appointment with me. She shared my shock when the doctor recommended chemotherapy. She just loved me. I can't point to one specific thing she did that stood out. She was there, and she loved me, and I felt safe because she was by my side.
After my oncology appointment (more than five weeks after surgery), I was able to drive again. I couldn't fully bend over, and I spent a lot of each day laying down with ice on my face, but I was so happy that I could take my sons to school.
Seven and a half weeks after surgery, my entire family came to visit. It was a hard weekend. My face was hurting badly and I struggled to keep up with conversation. My dad said to my mom, "I didn't expect her to be this bad." It was that bad. The adults in the family went to dinner and I had to have an ice pack on my face the entire time.
A few days after their visit, my mom and sister were with me at USC where I got a second opinion. My sister is on a cancer research team there and lined up her preeminent boss to look at my case and answer all of my questions. I felt like I had people in my corner. During that quick trip to Los Angeles I spent time chatting with my brother. He was stressed out about school and I jokingly said, "well, you could have a brain tumor." He looked at me and with complete sincerity he responded, "If there were anyway that I could take this from you, I would." I wanted to cry. He is the sweetest.
Throughout this whole process family members have called or texted to see how I'm doing. When they haven't wanted to call or text me, they would call or text my husband. Family matters a lot, and I'm not sure we could have made it through without them.
Above all, my husband has been there. He watches the kids and has been solid for them when I've needed to withdraw and heal. He takes them to do fun things. He bought all the Christmas presents in October without being asked! We may not have had Christmas without him! At times he has been frustrated because the healing process has been so hard, and then he shows more love and understanding. I love him, and I am so grateful for him. We have made it to this point because we have wonderful families supporting us.
I texted my family when I was in the first ER and told them something was wrong with my eye and I might have a blood clot. My sister was living in Idaho and hopped in the car with her roommate and started driving to Utah. They kept tabs on me to make sure they got to the right place, and they arrived at the ER in Salt Lake City minutes before we did. I quickly learned that my sister's roommate lost her grandmother (a dear family friend of ours) to breast cancer the night before. It was a touching time to feel my sister's support for me and also to extend love to her roommate and her family. My dad made arrangements to fly to Utah as soon as he could and arrived in SLC at 11pm that night. We stayed with my husband's aunt and uncle after being discharged really late, and we hoped my dad could have breakfast with us. He told me he didn't have time--he had to go back to Los Angeles for meetings, but he came to check on me and pray with me. The fact that he only had about an hour to spend with us made me feel even more loved. My mom was ready to hop on a plane as soon as we knew where we were going to be (Utah or Oregon) and help with our kids. My other sister and brother were praying for me and hoping everything would be okay.
We made it back to Oregon and things calmed down a bit, but they were going to get worse before they truly got better. The weekend before my surgery, my mom and dad came to town. My mom ended up staying for three weeks watching my kids, driving me around, taking me to the ER (again!), going with me to doctors' appointments. She was so helpful. It was comforting to have my dad visit too, though his stays were shorter so he could get back to work.
After my mom left a few weeks after my surgery, my in-laws came. My mother-in-law took my kids on walks and drove me to the grocery store so we could pick up groceries I had ordered online. I hardly remember anything from my in-laws visiting, but I remember my mother-in-law's sweetness.
A few days after my mother-in-law left, my husband's sister came to help us. She has six kids (they are older than ours, but still, she is a busy lady!), and she took the time to come help us. She made over a dozen freezer meals for us in two days--those meals fed us for months during our most difficult times. She drove me around town so I could get out of the house, paid for my hot chocolate when I realized I had forgotten my wallet and promised my son a treat, and let me sleep when I was too tired to go with her for drop offs and pick ups from school. One of the most amazing things she did was play with my kids on Sunday morning while my husband was in meetings. I was in bed, but I could tell she had patience to show them that I didn't have at the time, and she was so engaged. Six months post-surgery I am feeling much more engaged with my kids, but at the time she visited I couldn't comprehend being engaged with my kids at all!
Then my mom came again to go to my oncology appointment with me. She shared my shock when the doctor recommended chemotherapy. She just loved me. I can't point to one specific thing she did that stood out. She was there, and she loved me, and I felt safe because she was by my side.
After my oncology appointment (more than five weeks after surgery), I was able to drive again. I couldn't fully bend over, and I spent a lot of each day laying down with ice on my face, but I was so happy that I could take my sons to school.
Seven and a half weeks after surgery, my entire family came to visit. It was a hard weekend. My face was hurting badly and I struggled to keep up with conversation. My dad said to my mom, "I didn't expect her to be this bad." It was that bad. The adults in the family went to dinner and I had to have an ice pack on my face the entire time.
A few days after their visit, my mom and sister were with me at USC where I got a second opinion. My sister is on a cancer research team there and lined up her preeminent boss to look at my case and answer all of my questions. I felt like I had people in my corner. During that quick trip to Los Angeles I spent time chatting with my brother. He was stressed out about school and I jokingly said, "well, you could have a brain tumor." He looked at me and with complete sincerity he responded, "If there were anyway that I could take this from you, I would." I wanted to cry. He is the sweetest.
Throughout this whole process family members have called or texted to see how I'm doing. When they haven't wanted to call or text me, they would call or text my husband. Family matters a lot, and I'm not sure we could have made it through without them.
Above all, my husband has been there. He watches the kids and has been solid for them when I've needed to withdraw and heal. He takes them to do fun things. He bought all the Christmas presents in October without being asked! We may not have had Christmas without him! At times he has been frustrated because the healing process has been so hard, and then he shows more love and understanding. I love him, and I am so grateful for him. We have made it to this point because we have wonderful families supporting us.
Tuesday, February 27, 2018
Pondering the Thought of Dying and Living
When you are 32 you generally don't have much reason to think about how long you are going to live. My grandfather died when he was three weeks shy of turning 89. My grandmother is still kicking at nearly 88. But when you hear the words "brain tumor" and they are talking about your head, you start to think about death. It's not that I thought about death all the time after my diagnosis. I thought about many aspects of my surgery and many outcomes. I also knew very little about my diagnosis, and sometimes reading about it online emphasized the worst possible outcomes. Most people who have low-grade brain tumors don't spend much time writing about them, so people searching for answers online tend to hear the more tragic stories. So, I had days when I thought about death.
But more than thinking about death, I pondered about my situation more generally. Having a brain tumor felt like a big deal. It consumed my time immediately. I had a complicated schedule of doctors' appointments and I had no choice when those appointments would be (the drawbacks of working with a busy med-school hospital). In between scheduling babysitters, I would try to process the emotions I was feeling. Was I nervous about brain surgery? How would my surgery affect my ability to care for my kids? How would it affect my work? Would I ever be "normal" again? Why do I feel so overwhelmed? Am I allowed to feel overwhelmed or would that mean I am worrying too much?
I thought of every talk or sermon I had heard in church about people who were really suffering--a woman who had a poor relationship with her parents and was single and contracted cancer but still served as the president of her congregation's women's organization, a man who accidentally ran over and killed his son with a truck, a woman who couldn't move but kept a "can-do" list that included gratitude for being able to breathe. Here I was driving myself to doctors' appointments, breathing, walking, and feeling the support of my husband and parents! Who was I to even think my suffering registered on the scale of suffering? No one would ever use my life as an example of real suffering in a sermon! And then I thought, "Well, if this isn't a death sentence, then is doesn't really count."
But I still prayed because I still needed help. And I studied scripture--the Bible, the Book of Mormon, and sermons from modern church leaders. Then the answers came. First, God loved me no matter what, and He was helping me through this substantial challenge. He did consider this to be a real challenge, and He wasn't going to leave me alone. Second, God was upset that I hadn't come to Him with other challenges over the past few years! I was wrong to think that I was supposed to handle loneliness and isolation from moving to a new state without His help. That challenge and others with it were real challenges too, and God could have helped me through them. Third, God needs people to live, do His work, and take care of the people who can't take care of themselves. We may hear stories about people who are so sick they are incapacitated (and there is a lot to learn from these stories!), but none of those people who are sick could survive without stronger, willing, able people to carry them along their way. Yes, I was going to be cared for and lifted up for what felt like quite awhile to me, but I also felt that Heavenly Father wanted me to live and that I still had a lot to give.
With those feelings marinating, I ran into a friend on the trail by our house. She was kind and thoughtful as she checked on how I was doing. This friend does so much good, but she does it in the background. To my knowledge she is relatively healthy and able-bodied. She raises her children, supports her husband in his demanding career and church responsibilities, and reaches out to care for people in many ways. After we talked, I wrote her a note thanking her for what she does and sharing with her what I had felt about the importance of living--that it is a gift, but it is also a responsibility, and I appreciated how she was helping me and others. I continued to feel comforted by the feeling I had that God wanted me to live and would pull me through this.
At the same time though, I had fears and concerns about dying. There was a morning back in July when I struggled to fold our family's clean clothes and my children were being rambunctious. I felt so limited (partially from the Keppra I had been taking), and I wondered if it would be better for my family if I died from the brain tumor. I wondered if my husband would be happier to remarry and have more children with someone else. Those feelings vanished after I was off the medicine, but after surgery the pain was sometimes so intense, and sometimes what doctors would recommend for treatment was so intense, that I started to fear death. I worried my children would forget me or that I would be replaced by a step-mother. I worried that if I died my husband would fall in love with someone else and I would not matter anymore to the people I love so much. I prayed passionately that I would be allowed to live.
If you haven't had a potentially life-threatening illness, this all may sound absurd. But I don't think these feelings are unusual under the circumstances. I have had to come to terms with the reality that I don't know when I will die or how much time I have left--not because I had a brain tumor but because anything could happen, anytime, anywhere, that would disrupt my plan for my life. Learning to trust God more has been a blessing throughout this process. I have learned to enjoy my life more on a day-to-day basis instead of taking it for granted. I'm working to prioritize the people and things that matter most to me, living in a way that will support who I am and what I want to be for decades, if necessary, but that will also allow me to build memories and be happy in the moment too. I think that is a hard mentality to fully grasp in today's American culture. We are big on deprivation and sacrifice (think Whole 30, extreme exercise regimens, staying at work all night to one day get a promotion, etc.). And I am trying to get beyond that, to enjoy the moment as well as I can while still being responsible about planning for the future.
But more than thinking about death, I pondered about my situation more generally. Having a brain tumor felt like a big deal. It consumed my time immediately. I had a complicated schedule of doctors' appointments and I had no choice when those appointments would be (the drawbacks of working with a busy med-school hospital). In between scheduling babysitters, I would try to process the emotions I was feeling. Was I nervous about brain surgery? How would my surgery affect my ability to care for my kids? How would it affect my work? Would I ever be "normal" again? Why do I feel so overwhelmed? Am I allowed to feel overwhelmed or would that mean I am worrying too much?
I thought of every talk or sermon I had heard in church about people who were really suffering--a woman who had a poor relationship with her parents and was single and contracted cancer but still served as the president of her congregation's women's organization, a man who accidentally ran over and killed his son with a truck, a woman who couldn't move but kept a "can-do" list that included gratitude for being able to breathe. Here I was driving myself to doctors' appointments, breathing, walking, and feeling the support of my husband and parents! Who was I to even think my suffering registered on the scale of suffering? No one would ever use my life as an example of real suffering in a sermon! And then I thought, "Well, if this isn't a death sentence, then is doesn't really count."
But I still prayed because I still needed help. And I studied scripture--the Bible, the Book of Mormon, and sermons from modern church leaders. Then the answers came. First, God loved me no matter what, and He was helping me through this substantial challenge. He did consider this to be a real challenge, and He wasn't going to leave me alone. Second, God was upset that I hadn't come to Him with other challenges over the past few years! I was wrong to think that I was supposed to handle loneliness and isolation from moving to a new state without His help. That challenge and others with it were real challenges too, and God could have helped me through them. Third, God needs people to live, do His work, and take care of the people who can't take care of themselves. We may hear stories about people who are so sick they are incapacitated (and there is a lot to learn from these stories!), but none of those people who are sick could survive without stronger, willing, able people to carry them along their way. Yes, I was going to be cared for and lifted up for what felt like quite awhile to me, but I also felt that Heavenly Father wanted me to live and that I still had a lot to give.
With those feelings marinating, I ran into a friend on the trail by our house. She was kind and thoughtful as she checked on how I was doing. This friend does so much good, but she does it in the background. To my knowledge she is relatively healthy and able-bodied. She raises her children, supports her husband in his demanding career and church responsibilities, and reaches out to care for people in many ways. After we talked, I wrote her a note thanking her for what she does and sharing with her what I had felt about the importance of living--that it is a gift, but it is also a responsibility, and I appreciated how she was helping me and others. I continued to feel comforted by the feeling I had that God wanted me to live and would pull me through this.
At the same time though, I had fears and concerns about dying. There was a morning back in July when I struggled to fold our family's clean clothes and my children were being rambunctious. I felt so limited (partially from the Keppra I had been taking), and I wondered if it would be better for my family if I died from the brain tumor. I wondered if my husband would be happier to remarry and have more children with someone else. Those feelings vanished after I was off the medicine, but after surgery the pain was sometimes so intense, and sometimes what doctors would recommend for treatment was so intense, that I started to fear death. I worried my children would forget me or that I would be replaced by a step-mother. I worried that if I died my husband would fall in love with someone else and I would not matter anymore to the people I love so much. I prayed passionately that I would be allowed to live.
If you haven't had a potentially life-threatening illness, this all may sound absurd. But I don't think these feelings are unusual under the circumstances. I have had to come to terms with the reality that I don't know when I will die or how much time I have left--not because I had a brain tumor but because anything could happen, anytime, anywhere, that would disrupt my plan for my life. Learning to trust God more has been a blessing throughout this process. I have learned to enjoy my life more on a day-to-day basis instead of taking it for granted. I'm working to prioritize the people and things that matter most to me, living in a way that will support who I am and what I want to be for decades, if necessary, but that will also allow me to build memories and be happy in the moment too. I think that is a hard mentality to fully grasp in today's American culture. We are big on deprivation and sacrifice (think Whole 30, extreme exercise regimens, staying at work all night to one day get a promotion, etc.). And I am trying to get beyond that, to enjoy the moment as well as I can while still being responsible about planning for the future.
Friday, February 23, 2018
Everyone Goes Through Something Like This
This is out of order, but it's close to my heart, so I want to write about it now.
I remember very little from being in the hospital after my surgery. For example, I remember waking up at about 1:00 a.m. after surgery and wanting to walk around the halls. And then waking up at 5:00 a.m. and wanting to walk around the halls again. I think this was very important to me because I only knew surgery in terms of my two previous c-sections, so walking around the hospital floor was THE accomplishment. If I could walk, I could do anything. Or so I thought.
The next several days were hazy. To be perfectly honest, I don't even know how many days I was in the hospital. I think it was four, but I'm not sure. I remember watching "Five Flights Up" and "Cinderella," but I don't remember the plots of the movies. I remember that my husband brought our boys to visit me, but it's one of those memories that I might only remember because there is a picture of it. Oddly enough, I even put it together that the resident checking my drainage tube knew one of my friends from high school (they went to the same med school in Virginia). But these are just pieces. Fragments of a week.
Among these fragments, I remember that I had a visitor who told me, "Everyone goes through something like this." That sentence has bothered me for months, especially as my diagnosis seems to have become more serious. Especially on those days when I couldn't walk faster than a snail even though I was eight weeks post-surgery. Especially as I laid in bed struggling with a headache that left me incapacitated for months. Especially as I took chemo pills and wondered what new illness I would catch in the coming weeks.
There is a reason people use the phrase, "Well, it isn't brain surgery." Because brain surgery is exceptionally difficult. Because recovering from brain surgery is exceptionally difficult. So there were times I wanted to scream, "No! Everyone does NOT go through something like this. And if you think everyone goes through something like this, then you really don't understand the pain I am experiencing right now." But it's not just that.
When you have a brain tumor, you start to research and try to figure out what it means to have a brain tumor and what it means to be on chemotherapy. And what you realize is how awesomely amazingly good you have it. Sure, I had a brain tumor. And sure, it was a few months of hell to recover from it being removed. And yes, chemotherapy, even the "mild" kind my doctor swears I'm getting, feels mildly rotten round-the-clock. But, my goodness, I don't have a glioblastoma! I don't need radiation (at least not today)! No one has given me a life expectancy. I have a chronic illness, not a terminal one. Hallelujah!
So I have a problem with anyone saying, "Everyone goes through something like this." To say that to someone who is in the middle of their distress, whatever the cause, is to deny that person compassion. We should be listening and empathizing. As I've pondered the different things we can say to someone who is struggling, I've concluded that the only fail-safe thing to say is, "I'm sorry. Can I do anything to help?" We need to acknowledge that challenges and trials cannot be compared. Each challenge or trial deserves its own attention and acknowledgement independent of any other trial any other person has gone through. When we show compassion we try to understand how another person feels instead of dismissing what they are experiencing because all people experience challenges.
In addition to compassion, we need to show humility. In showing humility we can recognize that whatever trials we face, we have it pretty good. I think when a person says, "Everyone goes through something like this," there is a good chance they are struggling with some challenge themselves (and maybe want to be recognized for it?). But that's where the statement fails again. If we want to harp on the mere difficulty of our circumstances, someone can always beat us. Would you really say to a Syrian or African refugee, "Well, I know you just fled your country and your wife was raped and your children were killed, but you know, everyone goes through something like this"? Would you say that to a person who had been kidnapped or raped or been the victim of domestic violence? I couldn't because I know that despite the challenges I've faced and the challenges I will ever be likely to face in the future, the vast majority of the world's population has a much more difficult life than I ever will.
We all have challenges, I will give you that. But no good comes from comparing challenges. You can't put two lives next to each other and find some sort of equality in what two people face. "You get what you get and you don't throw a fit." For better or worse, life is unfair, and I've learned I'm not qualified to judge who has it better or worse. I am grateful for everyone who has supported me when I've been at my low points and hope that I can support others when they have their own lows.
I remember very little from being in the hospital after my surgery. For example, I remember waking up at about 1:00 a.m. after surgery and wanting to walk around the halls. And then waking up at 5:00 a.m. and wanting to walk around the halls again. I think this was very important to me because I only knew surgery in terms of my two previous c-sections, so walking around the hospital floor was THE accomplishment. If I could walk, I could do anything. Or so I thought.
The next several days were hazy. To be perfectly honest, I don't even know how many days I was in the hospital. I think it was four, but I'm not sure. I remember watching "Five Flights Up" and "Cinderella," but I don't remember the plots of the movies. I remember that my husband brought our boys to visit me, but it's one of those memories that I might only remember because there is a picture of it. Oddly enough, I even put it together that the resident checking my drainage tube knew one of my friends from high school (they went to the same med school in Virginia). But these are just pieces. Fragments of a week.
Among these fragments, I remember that I had a visitor who told me, "Everyone goes through something like this." That sentence has bothered me for months, especially as my diagnosis seems to have become more serious. Especially on those days when I couldn't walk faster than a snail even though I was eight weeks post-surgery. Especially as I laid in bed struggling with a headache that left me incapacitated for months. Especially as I took chemo pills and wondered what new illness I would catch in the coming weeks.
There is a reason people use the phrase, "Well, it isn't brain surgery." Because brain surgery is exceptionally difficult. Because recovering from brain surgery is exceptionally difficult. So there were times I wanted to scream, "No! Everyone does NOT go through something like this. And if you think everyone goes through something like this, then you really don't understand the pain I am experiencing right now." But it's not just that.
When you have a brain tumor, you start to research and try to figure out what it means to have a brain tumor and what it means to be on chemotherapy. And what you realize is how awesomely amazingly good you have it. Sure, I had a brain tumor. And sure, it was a few months of hell to recover from it being removed. And yes, chemotherapy, even the "mild" kind my doctor swears I'm getting, feels mildly rotten round-the-clock. But, my goodness, I don't have a glioblastoma! I don't need radiation (at least not today)! No one has given me a life expectancy. I have a chronic illness, not a terminal one. Hallelujah!
So I have a problem with anyone saying, "Everyone goes through something like this." To say that to someone who is in the middle of their distress, whatever the cause, is to deny that person compassion. We should be listening and empathizing. As I've pondered the different things we can say to someone who is struggling, I've concluded that the only fail-safe thing to say is, "I'm sorry. Can I do anything to help?" We need to acknowledge that challenges and trials cannot be compared. Each challenge or trial deserves its own attention and acknowledgement independent of any other trial any other person has gone through. When we show compassion we try to understand how another person feels instead of dismissing what they are experiencing because all people experience challenges.
In addition to compassion, we need to show humility. In showing humility we can recognize that whatever trials we face, we have it pretty good. I think when a person says, "Everyone goes through something like this," there is a good chance they are struggling with some challenge themselves (and maybe want to be recognized for it?). But that's where the statement fails again. If we want to harp on the mere difficulty of our circumstances, someone can always beat us. Would you really say to a Syrian or African refugee, "Well, I know you just fled your country and your wife was raped and your children were killed, but you know, everyone goes through something like this"? Would you say that to a person who had been kidnapped or raped or been the victim of domestic violence? I couldn't because I know that despite the challenges I've faced and the challenges I will ever be likely to face in the future, the vast majority of the world's population has a much more difficult life than I ever will.
We all have challenges, I will give you that. But no good comes from comparing challenges. You can't put two lives next to each other and find some sort of equality in what two people face. "You get what you get and you don't throw a fit." For better or worse, life is unfair, and I've learned I'm not qualified to judge who has it better or worse. I am grateful for everyone who has supported me when I've been at my low points and hope that I can support others when they have their own lows.
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