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.
Showing posts with label Doctors. Show all posts
Showing posts with label Doctors. Show all posts
Friday, March 30, 2018
When the Dexamethasone Ran Out
For the first week or so of being home from the hospital, I was feeling pretty good. Yes, I slept a lot and I didn't have a ton of energy, but I went grocery shopping once or twice and my mom would take me to breakfast after we got the kids where they needed to go. I thought that for having brain surgery life was pretty good and that things would only get better. They didn't.
After a week or so my prescription started weaning me off the dexamethasone steroid that was helping reduce the swelling in my head. As the dose kept being reduced, my headaches kept getting worse. When I was on the dexamethasone I wanted to take my oxycodone prescription back to the pharmacy for disposal because I didn't need it. After the dexamethasone was done I ended up in the ER with extreme pain. So bad that the nurses gave me oxycodone and it did nothing. So bad that they gave me morphine and it did nothing. And they gave me more morphine, and it still did nothing. After 12 tortuous hours in the ER with the only result being that I was told to come to my neurosurgery follow-up the next day (so we were 15 days post-surgery here), I went home at 4 a.m. and tried to sleep. Once everyone was gone in the morning I think I took a nap before my doctor's appointment, and eventually with the help of oxycodone and a lot more rest, I started to feel mildly horrible instead of on the brink of death.
I had been so afraid of becoming addicted to opioids that I had not wanted to take the oxycodone prescription at all. I am not in any way giving medical advice here (or anywhere on this blog), but my personal experience taught me that I needed to stay on top of the pain, and that was going to mean taking some oxycodone. If I didn't stay on top of the pain I was going to end up in the ER and things were going to be very uncomfortable and incredibly painful.
I also learned that your surgeon will not give you more steroids even though they help the pain and healing significantly. I'm not sure why this is, and I am sure there is a reason, but it was so frustrating. The doctors kept wanting to treat pain and I felt like they should be treating symptoms. I think (I don't know, but I think) that part of the healing process involves just letting the brain and skull do their thing, and that is going to be painful.
Lesson learned: keep your painkillers on hand for months. You may not use them continuously, but you will probably find a time when you definitely need them. The scary thing for me was how well the opioids worked when I didn't let myself get too far into the pain. I could remember that horrible, scary night in the hospital and realize the difference if I took the oxycodone at the right time in the pain cycle. There is a time and place for using the painkillers, and depending on your personality you have to find out how to best manage their use.
After a week or so my prescription started weaning me off the dexamethasone steroid that was helping reduce the swelling in my head. As the dose kept being reduced, my headaches kept getting worse. When I was on the dexamethasone I wanted to take my oxycodone prescription back to the pharmacy for disposal because I didn't need it. After the dexamethasone was done I ended up in the ER with extreme pain. So bad that the nurses gave me oxycodone and it did nothing. So bad that they gave me morphine and it did nothing. And they gave me more morphine, and it still did nothing. After 12 tortuous hours in the ER with the only result being that I was told to come to my neurosurgery follow-up the next day (so we were 15 days post-surgery here), I went home at 4 a.m. and tried to sleep. Once everyone was gone in the morning I think I took a nap before my doctor's appointment, and eventually with the help of oxycodone and a lot more rest, I started to feel mildly horrible instead of on the brink of death.
I had been so afraid of becoming addicted to opioids that I had not wanted to take the oxycodone prescription at all. I am not in any way giving medical advice here (or anywhere on this blog), but my personal experience taught me that I needed to stay on top of the pain, and that was going to mean taking some oxycodone. If I didn't stay on top of the pain I was going to end up in the ER and things were going to be very uncomfortable and incredibly painful.
I also learned that your surgeon will not give you more steroids even though they help the pain and healing significantly. I'm not sure why this is, and I am sure there is a reason, but it was so frustrating. The doctors kept wanting to treat pain and I felt like they should be treating symptoms. I think (I don't know, but I think) that part of the healing process involves just letting the brain and skull do their thing, and that is going to be painful.
Lesson learned: keep your painkillers on hand for months. You may not use them continuously, but you will probably find a time when you definitely need them. The scary thing for me was how well the opioids worked when I didn't let myself get too far into the pain. I could remember that horrible, scary night in the hospital and realize the difference if I took the oxycodone at the right time in the pain cycle. There is a time and place for using the painkillers, and depending on your personality you have to find out how to best manage their use.
Sunday, March 18, 2018
Surgery Day
Surgery day is a little foggy for me, partially because they gave me drugs to help me forget the surgery. My doctor had told me a few times that I would be the first surgery of the day and that I needed to arrive at 6:00 a.m. He said the hospital would call me to confirm my surgery time and arrival time, but that he would tell them I needed to be first. I don't remember if the hospital called to tell me when to come or not, but I wanted so badly to be first (you really don't want a tired doctor operating on your brain, plus you can't eat or drink after midnight the night before) that we decided to show up at 6:00 a.m.
The night before surgery I was concerned about what life would be like with my boys after my surgery. I rocked them and sang to them worried I wouldn't be able to do that afterwards. Imminent brain surgery was a powerful reminder of what I valued most in life. The morning of my surgery our dear neighbor and friend came over to stay with the boys until they woke up. I cannot remember all the details of who cared for my boys during my week at the hospital, but my mom was in town and neighbors and friends helped too when my husband was at the hospital with me.
We arrived at the hospital and checked in, but they said we weren't supposed to be there. If I remember correctly there was a ton of uncertainty about when my surgery would start, and eventually my surgeon found us in the MRI waiting room and assured me that I would be having surgery that day, but I remember feeling worried that I would get pushed off. One of the hardest things about having surgery when you are the mom is that there is so much planning that goes into ensuring things will run smoothly when you are incapable of being on your feet. I had worked so hard to make plans to cover all that I typically do, but I was incredibly scared that my surgery was not a priority for my doctors and that I would be pushed off to a more convenient time if they didn't decide to treat me.
I believe around 7:00 a.m. I was able to go get another MRI that they would use during surgery. We hung out in the MRI waiting room because it was less crowded and chaotic than the general surgery waiting room. The woman at the MRI check-in desk was very nice and compassionate when we explained our frustration that it seemed no one knew I needed to be checked in for surgery that day. My surgeon did find us and apologized for the confusion and delay, and then we waited. And waited. And my husband went to eat while I waited.
Around 10 or 11 a.m. I got called back to the surgery prep area. I changed to a hospital gown and socks. They finally figured out my IV and I survived even though I hadn't been able to drink water for nearly 12 hours. Some residents visited us, and I didn't trust them. The neurologist who would be monitoring my speech visited us. (A month or two after surgery I saw him in the halls and recognized him, but it took me a minute to place him. Then I excitedly stopped him and asked, "were you the neurologist on my surgery!?!?" He acted like he remembered, though I'm not sure he did. Personally, I was thrilled that something was coming back to me and my brain was still working.)
And then around 2 p.m. they sent my husband to the waiting room and I was whisked down the hall. I have a flash of memory that I was in the operating room and the doctor was asking me questions. I was answering them until I couldn't answer anymore--at some point I was unable to speak. I don't remember anything after that until I woke up in the ICU. It turns out I had a seizure during the surgery and couldn't talk, so they started me on Vimpat, an anti-convulsant that thankfully does not cause the same effects as Keppra on my body. Surgery was complete at about 7:00 p.m.
I think I have a vague memory of my mom, my husband, and my surgeon being there at some point while I was in the ICU, maybe around 9:00 p.m. And then I remember waking up at 1:00 a.m. and wanting to take a walk with the nurses. And then I woke up at 5:00 a.m. and wanted to take another walk with the nurses. If they were checking my vital signs every hour, I don't remember it. At about 10:00 a.m. I think they took me to get another MRI. After that MRI they took me to the neuro ward instead of the ICU. That surprised me because I thought I would stay in the ICU for 24 hours. I was happy to be out of the ICU even though I hardly remember it. Slowly, in the neuro ward I started to remember more things. After four days I was able to come home.
The night before surgery I was concerned about what life would be like with my boys after my surgery. I rocked them and sang to them worried I wouldn't be able to do that afterwards. Imminent brain surgery was a powerful reminder of what I valued most in life. The morning of my surgery our dear neighbor and friend came over to stay with the boys until they woke up. I cannot remember all the details of who cared for my boys during my week at the hospital, but my mom was in town and neighbors and friends helped too when my husband was at the hospital with me.
We arrived at the hospital and checked in, but they said we weren't supposed to be there. If I remember correctly there was a ton of uncertainty about when my surgery would start, and eventually my surgeon found us in the MRI waiting room and assured me that I would be having surgery that day, but I remember feeling worried that I would get pushed off. One of the hardest things about having surgery when you are the mom is that there is so much planning that goes into ensuring things will run smoothly when you are incapable of being on your feet. I had worked so hard to make plans to cover all that I typically do, but I was incredibly scared that my surgery was not a priority for my doctors and that I would be pushed off to a more convenient time if they didn't decide to treat me.
I believe around 7:00 a.m. I was able to go get another MRI that they would use during surgery. We hung out in the MRI waiting room because it was less crowded and chaotic than the general surgery waiting room. The woman at the MRI check-in desk was very nice and compassionate when we explained our frustration that it seemed no one knew I needed to be checked in for surgery that day. My surgeon did find us and apologized for the confusion and delay, and then we waited. And waited. And my husband went to eat while I waited.
Around 10 or 11 a.m. I got called back to the surgery prep area. I changed to a hospital gown and socks. They finally figured out my IV and I survived even though I hadn't been able to drink water for nearly 12 hours. Some residents visited us, and I didn't trust them. The neurologist who would be monitoring my speech visited us. (A month or two after surgery I saw him in the halls and recognized him, but it took me a minute to place him. Then I excitedly stopped him and asked, "were you the neurologist on my surgery!?!?" He acted like he remembered, though I'm not sure he did. Personally, I was thrilled that something was coming back to me and my brain was still working.)
And then around 2 p.m. they sent my husband to the waiting room and I was whisked down the hall. I have a flash of memory that I was in the operating room and the doctor was asking me questions. I was answering them until I couldn't answer anymore--at some point I was unable to speak. I don't remember anything after that until I woke up in the ICU. It turns out I had a seizure during the surgery and couldn't talk, so they started me on Vimpat, an anti-convulsant that thankfully does not cause the same effects as Keppra on my body. Surgery was complete at about 7:00 p.m.
I think I have a vague memory of my mom, my husband, and my surgeon being there at some point while I was in the ICU, maybe around 9:00 p.m. And then I remember waking up at 1:00 a.m. and wanting to take a walk with the nurses. And then I woke up at 5:00 a.m. and wanted to take another walk with the nurses. If they were checking my vital signs every hour, I don't remember it. At about 10:00 a.m. I think they took me to get another MRI. After that MRI they took me to the neuro ward instead of the ICU. That surprised me because I thought I would stay in the ICU for 24 hours. I was happy to be out of the ICU even though I hardly remember it. Slowly, in the neuro ward I started to remember more things. After four days I was able to come home.
Thursday, March 8, 2018
Pre-surgery Appointment (Round 2)
Because I ended up with a new neurosurgeon, we were invited back for a second pre-surgery appointment to be able to ask questions and get to know Dr. R. This was really nice for us. Dr. D, the one who couldn't do an awake craniotomy, was not the most charismatic guy we've met. Dr. R was really nice, and we appreciated being able to come back and ask him questions.
I can't remember a whole lot from our second visit. We went over some of my main concerns again:
- He wasn't going to shave very much of my head--just a thin line for the incision.
- They knew which drug to put me on if I did have a seizure.
- I should come in at 6am for my surgery, but the hospital would call me to confirm. (more on this in a different post)
- He would do his best to preserve my speech.
- The neurosurgery team would be keeping an eye on me for a year after my surgery.
That's about it. Most importantly I remember that the visit was as comforting as a visit with the person who is about to cut into your head can be.
Pre-Surgery Appointments (Round 1)
It is taking me a little while to get these posts up because I'm realizing that revisiting this experience is pretty difficult for me. Emotionally, I am doing pretty well now, but between July 4th of last year and sometime earlier this year, life was tough. We had so many unanswered questions and I was constantly sick in one way or another. It's very freeing to be out of that stage, at least for the foreseeable future, but going back and reliving all of those difficult moments for the purpose of blogging is challenging. Still, I think it's important to share these posts, so I'm back to put a few more up today.
After my first round of pre-surgery appointments (I had two rounds of appointments right before surgery because my neurosurgeon changed), my husband and I started an e-mail group to give people updates of what was going on with my surgery and recovery. This e-mail group was a really good idea. We weren't ready to go totally public with what was happening, but sending an e-mail was much better than having to explain all the details to our individual friends. Most of this post is from the e-mail I wrote after my pre-surgery appointments.
I had had surgery twice before my brain surgery, but both of those surgeries were c-sections. There isn't much prep for a planned c-section. Your doctor decides on a date, you show up, you get your spinal, and they cut you open, take out the baby, and sew you back up. But for brain surgery, I had a few special pre-op appointments. I went to my neurosurgeon (summary of that visit is below) and then had an appointment with preoperative medicine. Prior to scheduling this appointment, I had no idea preoperative medicine even existed as a hospital department. It was a pretty easy appointment. There was some blood work, questions about my health and allergies, and a nasal swab so they could make sure I didn't have MRSA. So, if you have to go in for a preoperative appointment, don't worry, it's no big deal. Unless you have MRSA, and then I would guess it is probably a bigger deal.
Here's the recap of my slightly more exciting pre-op appointment with my neurosurgeon(s).
On Friday, September 1st, I had an appointment with my neurosurgeon and an appointment with pre-operative medicine at OHSU. When we went to my appointment with Dr. D, the neurosurgeon, he told us that my functional MRI (completed August 24th) showed my tumor is bordering two of my speech production centers. Because of how close the tumor is to these sensitive areas and because things shift a bit after they open the skull, they don't want to rely solely on the MRI mapping for guidance during surgery. Instead they want to do an awake craniotomy, and Dr. D does not do that type of surgery. He called his colleague, Dr. R, to come talk to us about doing an awake craniotomy. Dr. R will be my surgeon now, and he said we can do surgery on September 19th. We still don't know all of the details, but this is what we were told on Friday:
- I will not have general anesthesia at any point during the surgery. Instead I will have a nerve block and local anesthesia where they cut my scalp and skull open and where the pressure points are holding my head in place so I don't move during surgery. If I cannot remain calm during surgery, or if I throw up or have a panic attack, they will have to close me back up and try again with me under anesthesia. So please pray that I will be completely calm before and during the surgery.
- They won't shave my head, or at least not very much. Instead I will get some funky braids and grease to keep my hair out of the way. (I have to admit I'm a bit relieved about this one.) But I will have a pretty big question mark shaped scar. I am also relieved that the surgeon said he would be happy to use metal staples instead of dissolvable ones. Usually they use dissolvable ones so the patient doesn't have to experience the pain of having metal staples removed, but metal staples form a better scar and I had long-term problems with dissolvable staples after my son P was born. I'm sure having the staples removed won't be fun, but it would be totally worth it to avoid over a year of staple problems like I had after P's birth.
- I will be talking to a neuropsychologist during the surgery, and the neurosurgeon will have a mirror to see my face throughout surgery so both can monitor any changes in my speech and expression throughout the surgery. This also means I will be able to see the neurosurgeon. I'm not clear on whether they will have something blocking my view of my brain though. I hope so, but the neurosurgeon said it would be an "undraped" surgery. I'm not sure I will be able to handle seeing what is going on.
- Surgery will take about 4 hours. They will use a 40x microscope to make sure they remove as much of the tumor as possible without removing my other brain matter. Because I teach for work and speaking is really important to me (like REALLY important) the surgeon will prioritize preserving speech even if it means leaving behind a little bit of the tumor. Based on the MRI the neurosurgeons think that my tumor is likely benign. They think it is a low grade glioma, so even though it is hopefully benign right now, because it is a glioma, there is a high risk of it turning malignant at any point and once it does it becomes much harder (nearly impossible) to fight. They think it is benign because the boundaries are well-defined and they don't see any necrosis (cell death). Also there was no growth between my July 4th MRI and my August 24th MRI. Removing a significant amount of the tumor will decrease the risk of future malignancy by reducing the number of tumor cells that could become malignant. Also, removing the tumor allows for a complete pathology report so we know what the tumor is and what genetic markers it has. If they only do a biopsy without removing the whole tumor it's possible that part of the tumor has different characteristics than the part they removed.
- The plan is to be in the ICU for one night after surgery. Apparently they check my neurological response every hour, so even if surgery goes well, this will be a pretty awful night. It should get better once I'm moved to the neuro ward.
- The risks of surgery are not insignificant. While unlikely, there is a chance I will not be able to speak after surgery. If I remember correctly, sometimes the loss of speech happens a few days after surgery. Should there be any speech deficit after surgery, the doctors are hopeful that I will be able to regain my speech with therapy.
- I will likely go home from the hospital on Friday, September 22nd. I will have a follow up appointment a couple weeks after surgery and then every three months for the first year. I'm pretty sure I will have routine MRIs for the rest of my life to check on tumor growth, but I'm not sure about the frequency.
I should be hearing from Dr. R's scheduler on Tuesday or Wednesday to confirm my surgery date and give me a time and also to schedule another appointment with Dr. R on September 14th.
Saturday, March 3, 2018
Functional MRI
Near the end of August I had my functional MRI ("fMRI"). I knew the fMRI would be longer than a regular MRI (closer to two hours instead of one) and that I would be required to perform certain tasks during the procedure. I had read a little bit about those tasks and tried to practice (think of as many words as possible that start with "B" and things like that). The goal of the fMRI was to map my speech and motor skills areas of the brain, and I really wanted to get it right because talking is very important to me.
When you have an MRI, the tech tends to tell you "hold very still" and "hold as still as possible" about every 30 seconds. These constant reminders can be nerve wracking, especially when you need to be perfectly still for two hours. When I had my first MRI in Utah, I got to choose a Pandora station to listen to, and that helped pass the time. At OHSU, there was no Pandora station. There was no comfort of any kind. Instead, the tech put towels around my head, making it harder to breathe. So, in the course of trying to hold perfectly still, I started to get claustrophobic. Eventually I had to tell the tech that I needed to come out of the tube. She gave me a hard time and wouldn't let me move, but at least she removed the towels. I also told her that I am a perfectionist and every time she told me to hold still, I felt like I was messing up. I told her that, instead, she needed to tell me I was doing a great job and also tell me how many minutes each sequence would be so I wouldn't feel stuck indefinitely. Those two changes helped a lot. (And guess what? The OHSU cancer center where I now get my MRIs actually has a recording that tells you how many minutes for each scan. And they let you listen to Pandora if you want it.)
When we finally got to the "functional" part of the MRI, I was relieved. Now I had something to do to distract myself while the MRI machine made all of its crazy noises. I could tap my fingers, fill in the blank for the sentences on the screen, and mentally list words beginning with any letter of the alphabet. Finally the MRI was done, and I could go home and wait for my pre-surgery appointment about a week later.
When you have an MRI, the tech tends to tell you "hold very still" and "hold as still as possible" about every 30 seconds. These constant reminders can be nerve wracking, especially when you need to be perfectly still for two hours. When I had my first MRI in Utah, I got to choose a Pandora station to listen to, and that helped pass the time. At OHSU, there was no Pandora station. There was no comfort of any kind. Instead, the tech put towels around my head, making it harder to breathe. So, in the course of trying to hold perfectly still, I started to get claustrophobic. Eventually I had to tell the tech that I needed to come out of the tube. She gave me a hard time and wouldn't let me move, but at least she removed the towels. I also told her that I am a perfectionist and every time she told me to hold still, I felt like I was messing up. I told her that, instead, she needed to tell me I was doing a great job and also tell me how many minutes each sequence would be so I wouldn't feel stuck indefinitely. Those two changes helped a lot. (And guess what? The OHSU cancer center where I now get my MRIs actually has a recording that tells you how many minutes for each scan. And they let you listen to Pandora if you want it.)
When we finally got to the "functional" part of the MRI, I was relieved. Now I had something to do to distract myself while the MRI machine made all of its crazy noises. I could tap my fingers, fill in the blank for the sentences on the screen, and mentally list words beginning with any letter of the alphabet. Finally the MRI was done, and I could go home and wait for my pre-surgery appointment about a week later.
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.
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.
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