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.
Tuesday, February 27, 2018
Friday, February 23, 2018
Keppra Allergy
I took Keppra for ten days. (More about the prescription here.) I started the day after leaving the ER, and two to three days later my life was flipped upside down. The morning of Saturday, July 8th, I made plans to go running with a friend. A week before being in Utah I could run five miles. After a few days on Keppra, I could hardly walk. We made it half a mile from my house, and I had to turn around and go home. Breathing was difficult.
I recorded the effects I was feeling from Keppra:
I recorded the effects I was feeling from Keppra:
- Complete loss of appetite and rapid weight loss
- Small pimples all over my body (my skin was in so much pain that I could not brush my hair without wincing)
- Unbearable fatigue
- Shortness of breath
- Loss of coordination--it became very hard to write and grasp objects
- Inability to think or process information (I even had to leave one of my classes early because I couldn't teach anymore)
- Horrible anxiety, worse than anything I had ever previously felt
- Inability to walk (I went from being able to run 5 miles to not being able to walk 1 mile)
- Sight problems--I could no longer see my computer screen without my glasses, even when holding it up close
- Muscular pain
On July 14th I asked the neurosurgeon about my prescription. He said he couldn't do anything about prescriptions, but he gave me a referral to a neurologist at OHSU. The only drawback was that my neurologist couldn't see me until August 2nd. I nearly had a panic attack on July 14th and could hardly sleep that night. With no doctor being able to tell me why I was taking the Keppra, I stopped. Two days later, I was back to myself and felt incredibly relieved.
Before my neurology appointment I was so worried they would tell me I needed to go back on Keppra. When the neurologist told me that anti-convulsants were unnecessary at that point, I was thrilled. They also told me that if I needed an anti-convulsant in the future, they had a recommendation and would forward it onto my neurosurgeon. I was so grateful to be taken seriously and get positive feedback.
What the Neurosurgeon Said
Back at the University of Utah on July 4, 2017, we met with a neurosurgery resident. He told me that I did indeed have a brain tumor, that it was likely low grade (based on what he could see from the cells), and that I needed to have it removed. He said that if he were performing the procedure he would do an awake craniotomy so my speech could be monitored during the procedure. That was about all we got out of him. He did ask about my family history and whether brain issues were a problem on either side of my family. I had been texting my mom throughout the evening, and she told me that a few people on both sides of my family had suffered from epilepsy. When we told the resident, he said, "well, at least this isn't epilepsy--we can get rid of this." And that was the first time someone gave us the impression that overwhelming as brain surgery may be, this was just a brain tumor and just brain surgery. It wasn't a lifelong problem or anything like that. (More on this later...)
With a few minutes' counsel and prescriptions for dexamethasone and Keppra (levetiracetam), my husband and I left the hospital and went to his aunt and uncle's house. Fifteen hours after I checked into the ER in Logan. I was told to check in with the neurosurgeons at OHSU when I got back to Oregon. It was a long day. The dexamethasone was a steroid to help reduce the swelling around my eye, and you are supposed to wean off of it instead of stopping cold turkey, but no one told me that. I don't think it worked quite as well as it could have if I had been taking it properly. The Keppra was more of a prophylactic. It is an anti-convulsant, meant to subdue seizure activity. I hadn't had a seizure, but I think the resident didn't want to be accused of sending me away without medication for seizures just in case.
We made it home on July 6th, and I met with a PA at my primary care physician's office on July 7th. He didn't know much about brain tumors, dexamethasone, or Keppra either, so his office tried to start the referral process to get me into the neurosurgeon at OHSU. The days of waiting to see a doctor at OHSU seemed so long, but when I look back at my calendar, I realize it was only one week. I made several calls to OHSU and my PCP's office to make sure the referral was being processed, and spending all of that time on the phone was frustrating. However, now that I understand how strict a neurosurgeon's schedule is and the fact that they only meet with patients one day a week, I realize I was very lucky to get an appointment with a doctor on July 14th.
When I went to see the doctor at OHSU, I first had to meet with another resident. She came in and pulled up my MRI images. She said that the tumor looked low grade and that they would probably just watch and wait with persistent MRIs. This was frustrating because it contradicted what the resident had said in Utah, but then the doctor came in. Without even fully entering the room, he saw my MRI on the computer screen and said, "You're too young for this; that needs to come out now." He wanted to do surgery by the end of the month, and I asked if we had a little more time. Fortunately he said yes, and I was able to get some of my affairs in order--finishing the class I was teaching that summer, arranging for childcare for my kids post-surgery, taking more time to process everything that was going on, etc.
Overall, I left the appointment at OHSU feeling pretty relieved that two doctors had given me the same opinion--surgery was best, preferably sooner rather than later but a little delay wouldn't hurt. The only frustrating thing was learning that a neurosurgeon can't do anything if you think you are reacting poorly to a drug you've been prescribed. I would have to wait to meet with a neurologist and figure out what to do about my apparent Keppra allergy.
With a few minutes' counsel and prescriptions for dexamethasone and Keppra (levetiracetam), my husband and I left the hospital and went to his aunt and uncle's house. Fifteen hours after I checked into the ER in Logan. I was told to check in with the neurosurgeons at OHSU when I got back to Oregon. It was a long day. The dexamethasone was a steroid to help reduce the swelling around my eye, and you are supposed to wean off of it instead of stopping cold turkey, but no one told me that. I don't think it worked quite as well as it could have if I had been taking it properly. The Keppra was more of a prophylactic. It is an anti-convulsant, meant to subdue seizure activity. I hadn't had a seizure, but I think the resident didn't want to be accused of sending me away without medication for seizures just in case.
We made it home on July 6th, and I met with a PA at my primary care physician's office on July 7th. He didn't know much about brain tumors, dexamethasone, or Keppra either, so his office tried to start the referral process to get me into the neurosurgeon at OHSU. The days of waiting to see a doctor at OHSU seemed so long, but when I look back at my calendar, I realize it was only one week. I made several calls to OHSU and my PCP's office to make sure the referral was being processed, and spending all of that time on the phone was frustrating. However, now that I understand how strict a neurosurgeon's schedule is and the fact that they only meet with patients one day a week, I realize I was very lucky to get an appointment with a doctor on July 14th.
When I went to see the doctor at OHSU, I first had to meet with another resident. She came in and pulled up my MRI images. She said that the tumor looked low grade and that they would probably just watch and wait with persistent MRIs. This was frustrating because it contradicted what the resident had said in Utah, but then the doctor came in. Without even fully entering the room, he saw my MRI on the computer screen and said, "You're too young for this; that needs to come out now." He wanted to do surgery by the end of the month, and I asked if we had a little more time. Fortunately he said yes, and I was able to get some of my affairs in order--finishing the class I was teaching that summer, arranging for childcare for my kids post-surgery, taking more time to process everything that was going on, etc.
Overall, I left the appointment at OHSU feeling pretty relieved that two doctors had given me the same opinion--surgery was best, preferably sooner rather than later but a little delay wouldn't hurt. The only frustrating thing was learning that a neurosurgeon can't do anything if you think you are reacting poorly to a drug you've been prescribed. I would have to wait to meet with a neurologist and figure out what to do about my apparent Keppra allergy.
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.
Symptoms and Diagnosis
Doctors have been quite non-committal about whether or not I had any brain tumor symptoms. I think they are just covering for their profession because so many doctors failed to give me an MRI when my symptoms indicated one was needed. What I do know is that after my second son was born in March 2016, I started having unusual symptoms that sent me to doctors and therapists for over a year until finally I landed in the emergency room while on vacation and the doctor decided to run a CT scan followed by an MRI. Then, miraculously, after having surgery to remove the tumor, all of my symptoms went away and I felt like myself again. I had a hole in my head, but otherwise, I felt like myself.
The first symptom was one I recognized. In January 2013, I went to my newborn's first pediatric appointment in a brightly-lit doctor's office. As I was filling out the paperwork, I started to see kaleidoscope shapes hovering in my line of sight. I had to close my eyes and wait about 20 minutes for it to pass. I learned it was a visual aura and that sometimes women can have them after giving birth. I had three in my first son's first year of life and didn't think much of them--eventually they went away. So when I had kaleidoscope vision at my second son's first doctor's appointment in April 2016 I didn't think much of it either. Only I continued to have the visual auras and had to adapt my lifestyle to avoid their triggers. Being in any brightly-lit place could trigger an aura--doctor's offices, the gym, even shopping at Michael's. Worse was my pre-dawn commute to work that included flashing tail lights as cars descended down a hill in stop-and-go traffic. I learned to close my eyes or wear sunglasses under fluorescent lighting. I learned the back roads of Washington and Multnomah counties so I could drive to work without being pestered by blinking red on the freeway. After my diagnosis, a neurologist told me that these visual auras can be caused by swelling in the brain, which happens if you have a brain tumor and your head swells after giving birth. I don't love to look at flashing lights, but post-surgery I no longer worry about the auras.
My second symptom was frightening. Forty-three days after I had a c-section, our family boarded a plane to move across the country. Near the end of our flight, my heart started beating rapidly and I felt like I couldn't breathe. A panic attack. I had spent my entire life flying, including flying cross-country with an infant/toddler, but all of the sudden flying made me nervous and we flew 17 times in my second son's first year of life. We didn't just travel a lot though. We also moved twice before he was six months old. In the midst of all this change, I had a handful of panic attacks. Anxiety gripped me for months. Therapy helped tremendously, but even as I overcame many of the challenges related to all the change I had experienced, anxiety was still my little tag-along. We lived in a peaceful coexistence for several months--I would feel anxiety pestering me and would have to calm him down so I could continue going about my day. Then, after surgery, that tag-along was gone. Sure, I get anxious and nervous on occasion, like anyone, but the constant companionship was gone.
The third symptom I eventually tried to ignore. I was at book club in April 2016 and my elbow started tingling. Then my hand was tingling. The next morning I woke up and my whole arm was tingling. I went to urgent care after it had been tingling for hours. In urgent care my legs started tingling, so they sent me to the emergency room. My blood work was fine, so the ER sent me home. The tingling would settle on some part of my body, usually my ankles, and just stay for weeks. Doctors dismissed the tingling saying they would need to monitor my symptoms for months before running any other tests. So I decided to consider myself healthy and pretend like the tingling was nothing. But, like my other symptoms, the tingling off and on until my brain surgery, and then, it too was gone.
I believe all of these symptoms were attributable to my brain tumor in one way or another because there was such a distinct change after the tumor was removed. But no doctor ran any kind of brain scan as I reported these symptoms. Instead, my eye swelled shut the night of July 3rd when our family was visiting relatives in Northern Utah. When I woke up the morning of July 4th, I couldn't see out of my left eye.
It was a holiday and we didn't know any doctors in the area. The day before I thought I had pink eye, but I felt a tremendous sense of urgency about getting to a doctor the morning of the Fourth, so we went to the ER at a small local hospital. I will forever be grateful to Dr. Danny Spencer, the ER doctor that day, for deciding to run a CT scan. He thought it was probably pink eye or something like that, and gave me antibiotic drops. But when I told him that I felt immense pressure behind my eye every time I bent over, Dr. Spencer said I might have a blood clot and that a CT scan might show whether or not there was a clot. The CT scan definitely showed something, and it wasn't a clot. So the doctors ran an MRI. There was no neurology team at Logan Hospital, so when it looked like I had a brain tumor, they sent me down to the University of Utah. At this point everyone in Logan had forgotten that my eye was painfully swollen and, brain tumor or not, I really wasn't feeling well.
The first symptom was one I recognized. In January 2013, I went to my newborn's first pediatric appointment in a brightly-lit doctor's office. As I was filling out the paperwork, I started to see kaleidoscope shapes hovering in my line of sight. I had to close my eyes and wait about 20 minutes for it to pass. I learned it was a visual aura and that sometimes women can have them after giving birth. I had three in my first son's first year of life and didn't think much of them--eventually they went away. So when I had kaleidoscope vision at my second son's first doctor's appointment in April 2016 I didn't think much of it either. Only I continued to have the visual auras and had to adapt my lifestyle to avoid their triggers. Being in any brightly-lit place could trigger an aura--doctor's offices, the gym, even shopping at Michael's. Worse was my pre-dawn commute to work that included flashing tail lights as cars descended down a hill in stop-and-go traffic. I learned to close my eyes or wear sunglasses under fluorescent lighting. I learned the back roads of Washington and Multnomah counties so I could drive to work without being pestered by blinking red on the freeway. After my diagnosis, a neurologist told me that these visual auras can be caused by swelling in the brain, which happens if you have a brain tumor and your head swells after giving birth. I don't love to look at flashing lights, but post-surgery I no longer worry about the auras.
My second symptom was frightening. Forty-three days after I had a c-section, our family boarded a plane to move across the country. Near the end of our flight, my heart started beating rapidly and I felt like I couldn't breathe. A panic attack. I had spent my entire life flying, including flying cross-country with an infant/toddler, but all of the sudden flying made me nervous and we flew 17 times in my second son's first year of life. We didn't just travel a lot though. We also moved twice before he was six months old. In the midst of all this change, I had a handful of panic attacks. Anxiety gripped me for months. Therapy helped tremendously, but even as I overcame many of the challenges related to all the change I had experienced, anxiety was still my little tag-along. We lived in a peaceful coexistence for several months--I would feel anxiety pestering me and would have to calm him down so I could continue going about my day. Then, after surgery, that tag-along was gone. Sure, I get anxious and nervous on occasion, like anyone, but the constant companionship was gone.
The third symptom I eventually tried to ignore. I was at book club in April 2016 and my elbow started tingling. Then my hand was tingling. The next morning I woke up and my whole arm was tingling. I went to urgent care after it had been tingling for hours. In urgent care my legs started tingling, so they sent me to the emergency room. My blood work was fine, so the ER sent me home. The tingling would settle on some part of my body, usually my ankles, and just stay for weeks. Doctors dismissed the tingling saying they would need to monitor my symptoms for months before running any other tests. So I decided to consider myself healthy and pretend like the tingling was nothing. But, like my other symptoms, the tingling off and on until my brain surgery, and then, it too was gone.
I believe all of these symptoms were attributable to my brain tumor in one way or another because there was such a distinct change after the tumor was removed. But no doctor ran any kind of brain scan as I reported these symptoms. Instead, my eye swelled shut the night of July 3rd when our family was visiting relatives in Northern Utah. When I woke up the morning of July 4th, I couldn't see out of my left eye.
 |
| This is me really trying to keep my left eye (on the right in the picture) open! |
My husband and I made last minute arrangements for our kids and drove down to Salt Lake City. Fortunately we stopped at In 'N' Out on the way down because people in hospitals don't like to let you eat or drink anything. At "The U" they started me on dexamethasone, a steroid to decrease the swelling in my eye, and we waited hours for the neurosurgery resident to come talk to us about my tumor. We learned that someone had plowed their car into a homeless shelter downtown, and things were taking longer (as they do at teaching hospitals) due to the injuries. Until the neurosurgery resident arrived, all of the other doctors and nurses were very somber. They seemed to understand that having a brain tumor is a big deal. We still had no idea what it meant for us and how it would change our lives.
Introduction
My name is Megan, and five months ago I had brain surgery. My tumor was a grade II oligodendroglioma in my left frontal lobe, about 2-2.5 cm in diameter. The surgeon performed a gross total resection. In another post I will go through what all this means in English because it's pretty complex and seems to get a little bit more complex every time I learn something new about my chronic illness.
Just before my surgery, my husband and I created an e-mail group to give our family and friends updates about my surgery and recovery. That worked well in the first month or two--I wasn't writing very much and people really just wanted to know how I was doing physically. As more time has passed and I realized that my surgery was not so much a one-and-done experience, I started to wonder if I should write a blog about some of the things I have felt and struggled with emotionally, my medical questions, things I have learned, and, of course, the physical aspects of my recovery. I hope that by writing other brain surgery patients will find helpful information and be comforted in knowing they are not alone. I also hope that people will understand some of the complexity that comes with being diagnosed with a chronic illness, particularly one that affects the brain.
Just before my surgery, my husband and I created an e-mail group to give our family and friends updates about my surgery and recovery. That worked well in the first month or two--I wasn't writing very much and people really just wanted to know how I was doing physically. As more time has passed and I realized that my surgery was not so much a one-and-done experience, I started to wonder if I should write a blog about some of the things I have felt and struggled with emotionally, my medical questions, things I have learned, and, of course, the physical aspects of my recovery. I hope that by writing other brain surgery patients will find helpful information and be comforted in knowing they are not alone. I also hope that people will understand some of the complexity that comes with being diagnosed with a chronic illness, particularly one that affects the brain.
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