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.
Friday, March 30, 2018
Oncology
One of the appointments that was scheduled for me while I was in the hospital was a neurooncology appointment. I didn't understand. I was sure I had a brain tumor, not cancer, based on what the surgeons had told me. But we went to the neurooncology appointment figuring it would just be some sort of transition for monitoring after neurosurgery stopped wanting to see my MRIs. When I started this blog, I thought I would want to write about all the details of my journey step-by-step, and there is value to that. But at the moment I've had about two weeks of feeling like my old self. Not just my pre-surgery self. I'm talking about my old, "before I started having symptoms" self. It feels amazing, and while I believe there is value to having a detailed record of what happened and sorting through all of the feelings I experienced along the way, I can't go back there right now. I know that my next MRI could be bad. Or an MRI in 3 or 5 or 10 years could be bad. And I just need to enjoy this reprieve of feeling normal while still finishing this record.
So back in October 2017 we went to the neurooncologist, and we were shocked that he recommended chemotherapy and acted like he was giving me a gift by not recommending radiation too. Here's the summary of what happened in the months after that.
So back in October 2017 we went to the neurooncologist, and we were shocked that he recommended chemotherapy and acted like he was giving me a gift by not recommending radiation too. Here's the summary of what happened in the months after that.
- I was seeing a neurooncologist at OHSU because I was assigned to him after my surgery. That doctor is the only doctor who recommended chemotherapy based on my tumor pathology and surgery success. In medical-speak, I had a grade 2 oligodendroglioma that was IDH mutant and had 1p/19q genetic codeletions. My neurosurgeon performed a gross total resection. In English, I had a low grade tumor that had likely been growing for awhile and has genetic markers that increase the efficacy of chemotherapy. The neurosurgeon removed all visible tumor. The standard of care for patients 40 years old or younger with all of the aforementioned conditions is "watch and wait"--typically an MRI every three months for the first year. If no tumor regrowth occurs during that time, then you have MRIs every six months. "Watch and wait" was recommended to me by my neurosurgeon and by another neurooncologist at USC whom I saw for a second opinion in mid-November. The doctor at OHSU recommended 6-12 months of chemotherapy (temozolomide) to kill any microscopic remaining tumor cells still in my brain.
- In November I was two months post-surgery, still experiencing facial swelling, still battling unimaginable headaches, and not sure if I would ever get better. I was certain at that point that I could never experience brain surgery again and the thought of having radiation (i.e., the thought of losing my hair) if my tumor started to grow again was terrifying. When the OHSU doctor emphasized that my tumor was grade 2+ (it looked like it was approaching grade 3, aka anaplastic, aka definitely cancerous), we felt like we would regret it if I didn't do chemo. Plus, the OHSU doctor swore up and down that temozolomide was a mild form of chemo. So I started chemo in mid-November (5 days of taking pills at night with 23 days to recover).
- Round 1 chemo (mid-November): no sweat, I felt better than I had felt in two months and could actually lighten up on how many Tylenol and Advil pills I was taking. Round 2 chemo (mid-December): awful, they increased the dose about 30% and the side effects were horrible (nausea, fatigue, potential skin infections). Round 3 (mid-January): my dose was reduced back to the November dose and my start date was delayed two days because I started having multiple skin problems after Round 2. In the third-fourth week of Round 3 I had a spate of cold sores and other skin problems similar to those I had in Round 2. I took some antivirals and went into Round 4 of the pills. Round 4 (started February 10th): the days I was taking the chemo pills were my best, most energetic days of the whole month of February. Prior to February 10th I was recovering from Round 3, and after I finished the pills I got really sick--incredible fatigue for several days, strep throat (I forgot how much that hurt), and a huge skin infection on my face. I spent a good chunk of February in bed taking antibiotics.
- On February 14th (my last day taking Round 4 of pills), I went to see the OHSU neurooncologist. Throughout the chemo process I had been searching for information about my tumor and post-operative treatment. I didn't have a lot of success, so I asked the doctor what studies he was relying on to support prescribing chemo for me. He got very upset, lied to me about the extent of my surgery (he said there is no such thing as a gross total resection and that I didn't have one) and what the standard of care is, and then said he would no longer treat me and stormed (I am not exaggerating here) out of the room. Fortunately the nurse stayed and talked to me for 30+ minutes. She said that if she were in my position, she would not do chemotherapy. Doctors against chemo right now: 3, doctors in favor: 1. I explained to her that I did have the logistics of my life figured out to be able to do chemo, so if possible, I would like to keep doing it instead of risking having to do chemo later.
- Then I went home and read the studies the OHSU doctor threw out during my appointment. I learned two things: 1) I perfectly fit the description for patients who should not receive additional (chemo/radiation) treatment after surgery, and 2) the study he was using to say that all grade 2 patients should have chemotherapy did not test gross total resection patients--it explicitly tested subtotal resection patients. This is significant because when someone has a subtotal resection you can still see the tumor on MRI images--meaning, you can see whether chemotherapy is helping, doing nothing, or hurting. I have no visible tumor on my MRIs, so there is no way to tell whether chemotherapy is doing any good. I stored all of this away thinking I would try to do another round of chemo in March before meeting with the only other neurooncologist in Oregon in April.
- I became fatigued after the chemo pills ended, and I needed a lot of sleep to get over it, but I expected this to a certain extent. After the fatigue wore off, it snowed enough in Portland (meaning that we had enough snow to make a couple snowballs and the roads were completely clear) that my older son did not have preschool for a whole week. My toddler fortunately did have preschool, bless their hearts, because I was at urgent care twice for strep throat and cellulitis and spent a couple days in bed waiting for my throat to feel better and for my face to heal. In the midst of all that pain, I decided I was done with chemotherapy. I could handle being sick like that if I were in a life or death situation, but instead I'm in a quality of life situation--I can do most things that I could do before surgery and I have enough energy to try to get into a routine when I'm not on chemo, so I would rather enjoy this phase of life and deal with whatever comes next, whenever it comes. On Monday, February 26th, I called the oncology nurse and told her I'd like to stop. She was completely supportive, and I felt a sense of relief that I haven't felt in months, maybe even a year or so.
After all that, I ended up getting strep throat a second time, and after yet another round of antibiotics, I am finally feeling WAY better. I'm starting to teach again next week and I've been working on a project that has helped me feel so fulfilled. When I look back at my medical history and I think about what choices I made for treating this tumor, I do get worried that I am perhaps putting myself at greater risk for a recurrence or that I will have to go through this whole process again, but I am trying to focus on enjoying each day and making the most of the happiness in front of me right now. Life is better than it has been in a long long time, and I am so grateful for that.
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.
Monday, March 19, 2018
Milestones After Recovery
Before my surgery, I wanted to know details about what the recovery was like. Do you ever get back to normal? What is normal like after surgery? Here are some things I remember as being important that might help someone who is also going to have brain surgery. Today marks six months since my surgery, and I will say that I am feeling pretty normal these days.
10 days post-surgery: My prescription for dexamethasone ended. It send me into terrible facial swelling and headaches and landed me back in the ER, where after 12 hours they told me that this swelling was normal and I should go home. Avoid the ER whenever possible.
16 days post-surgery: the P.A. removed the metal staples from my head. I still had scabs and a lot of healing to do. I definitely didn't touch my scar directly.
5 1/2 weeks post-surgery: I woke up on a Saturday feeling good enough to go somewhere with my kids, so our family piled in the car and went to a pumpkin patch. It felt amazing to get out of the house.
6 weeks post-surgery: A raging horrible headache returned. This time I went to my primary care doctor who managed to get me an appointment with my neurosurgeon when I had previously been told it was impossible. I also went to my toddler's class Halloween party. Bad idea. Bending over was still really hard, and I felt pretty bad afterward. Nap time for mom.
7 weeks post-surgery: I was able to very carefully blow-dry my hair, put on make-up, and look like a normal person. Going through the process of "getting ready" made me so tired that I needed a nap.
8 weeks post-surgery: I got on a plane. Bad idea. Ice packs helped. My head was still so swollen that wearing my glasses seemed impossible.
9 weeks post-surgery: A huge improvement in one week! I stopped taking so many Tylenol and Advil pills. We made an overnight trip to Seattle for Thanksgiving weekend.
10 1/2 weeks post-surgery: I still needed lots of naps. My husband and I went to see a film and the set-up bothered me and made me feel woosy. I spent a lot of the film with my head in my lap. I came home with a bad headache and had to pull over to take Tylenol when taking the babysitter home. Bending over was becoming easier around this point though. I could do my own laundry.
11 1/2 weeks post-surgery: I started speech therapy to help get my mouth to open more widely. Between the exercises my therapist gave me and just plain old stretching out my face, my mouth eventually opened like normal sometime after 4 months post-op.
12 1/2 weeks post-surgery: I could walk 5 miles at a reasonable pace. For at least two months I could walk, but I was terribly slow and trying to go fast made my head hurt. Even at 12 1/2 weeks post-op, I still struggled to put a phone to my left ear or use my left earbud when listening to music. By four or five months post-op, that wasn't a problem. Also, bending over became much easier around 12-13 weeks post-op and I could blow dry my hair with my head upside down. Victory!
14 weeks post-surgery: I got a haircut! Also, I started using some hydrogen peroxide (check with your doctor on this) on my few remaining scabs, and that definitely helped them go away. You never want to pick your scabs because you want the scar to heal and not get infected, but some of the long-term scabs needed a little help to get the blood to go away.
4 months post-surgery: I tried running on a treadmill. I stopped after a minute or two because it made my head hurt. My head still needed more time to heal. I stopped needing naps between 3-4 months post-surgery, but I still needed to sleep 9-10 hours each night.
4 1/2 months post-surgery: I could get by on 8 hours of sleep.
5 months post-surgery: I could run again on the treadmill without my head hurting. Between 5 and 6 months post-op I was able to do a few hours of remote work and think clearly enough to make substantial edits to a graduate-level document.
6 months post-surgery: I feel human again. My head still hurts occasionally, but I have WAY more energy with my kids. So much more energy. I do well on 8 hours of sleep and can't really sleep longer, but I can also survive on a little less sleep. When I only get 6 hours of sleep, my body really struggles. I get headaches and shakes and things like that. Running is only limited by being physically out of shape, not by my head hurting. I am looking forward to going back to part-time work, and I stay busy taking care of household responsibilities. At 3, 4, and sometimes even 5 months post-op I would feel like I didn't want to do certain things (laundry, dishes, cleaning, etc.). At the time it felt appropriate to put certain things off. Now I feel differently, and I know that if I don't finish a task, it's because I didn't want to instead of because I couldn't and needed to rest.
Take away point here: Recovery IS possible and it WILL happen (except in circumstances where it doesn't... I'm not trying to minimize people who have much more difficult brain tumors than I did). Be patient with yourself and realize that healing takes an incredibly long time. I would imagine that even if you needed substantial therapy after brain surgery, you would eventually see similar improvement and results. I can definitely say that your skull heals and that is life changing in terms of what you are able to accomplish. But a healing skull takes about 12 weeks, and that feels like a really really long time.
10 days post-surgery: My prescription for dexamethasone ended. It send me into terrible facial swelling and headaches and landed me back in the ER, where after 12 hours they told me that this swelling was normal and I should go home. Avoid the ER whenever possible.
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| Oh my gosh, my face was so swollen. It hurt so badly. In the ER they gave me oxycodone and it did nothing. Then they gave me morphine and it helped for 30 minutes. Then they gave me more morphine. Finally at 4am they let me go home. Then my son woke up after I went to sleep. It was one of the worst nights of my life. |
16 days post-surgery: the P.A. removed the metal staples from my head. I still had scabs and a lot of healing to do. I definitely didn't touch my scar directly.
5 1/2 weeks post-surgery: I woke up on a Saturday feeling good enough to go somewhere with my kids, so our family piled in the car and went to a pumpkin patch. It felt amazing to get out of the house.
6 weeks post-surgery: A raging horrible headache returned. This time I went to my primary care doctor who managed to get me an appointment with my neurosurgeon when I had previously been told it was impossible. I also went to my toddler's class Halloween party. Bad idea. Bending over was still really hard, and I felt pretty bad afterward. Nap time for mom.
7 weeks post-surgery: I was able to very carefully blow-dry my hair, put on make-up, and look like a normal person. Going through the process of "getting ready" made me so tired that I needed a nap.
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| Where that little division is in my hair on the right side of the picture (left side of my head)--that's where my scar was. |
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| This is what things looked like underneath. I had to be very careful washing my hair and I absolutely could not rub my scalp where they had cut my skull. That would send me into a tailspin headache for days. |
9 weeks post-surgery: A huge improvement in one week! I stopped taking so many Tylenol and Advil pills. We made an overnight trip to Seattle for Thanksgiving weekend.
10 1/2 weeks post-surgery: I still needed lots of naps. My husband and I went to see a film and the set-up bothered me and made me feel woosy. I spent a lot of the film with my head in my lap. I came home with a bad headache and had to pull over to take Tylenol when taking the babysitter home. Bending over was becoming easier around this point though. I could do my own laundry.
11 1/2 weeks post-surgery: I started speech therapy to help get my mouth to open more widely. Between the exercises my therapist gave me and just plain old stretching out my face, my mouth eventually opened like normal sometime after 4 months post-op.
12 1/2 weeks post-surgery: I could walk 5 miles at a reasonable pace. For at least two months I could walk, but I was terribly slow and trying to go fast made my head hurt. Even at 12 1/2 weeks post-op, I still struggled to put a phone to my left ear or use my left earbud when listening to music. By four or five months post-op, that wasn't a problem. Also, bending over became much easier around 12-13 weeks post-op and I could blow dry my hair with my head upside down. Victory!
14 weeks post-surgery: I got a haircut! Also, I started using some hydrogen peroxide (check with your doctor on this) on my few remaining scabs, and that definitely helped them go away. You never want to pick your scabs because you want the scar to heal and not get infected, but some of the long-term scabs needed a little help to get the blood to go away.
4 months post-surgery: I tried running on a treadmill. I stopped after a minute or two because it made my head hurt. My head still needed more time to heal. I stopped needing naps between 3-4 months post-surgery, but I still needed to sleep 9-10 hours each night.
4 1/2 months post-surgery: I could get by on 8 hours of sleep.
5 months post-surgery: I could run again on the treadmill without my head hurting. Between 5 and 6 months post-op I was able to do a few hours of remote work and think clearly enough to make substantial edits to a graduate-level document.
6 months post-surgery: I feel human again. My head still hurts occasionally, but I have WAY more energy with my kids. So much more energy. I do well on 8 hours of sleep and can't really sleep longer, but I can also survive on a little less sleep. When I only get 6 hours of sleep, my body really struggles. I get headaches and shakes and things like that. Running is only limited by being physically out of shape, not by my head hurting. I am looking forward to going back to part-time work, and I stay busy taking care of household responsibilities. At 3, 4, and sometimes even 5 months post-op I would feel like I didn't want to do certain things (laundry, dishes, cleaning, etc.). At the time it felt appropriate to put certain things off. Now I feel differently, and I know that if I don't finish a task, it's because I didn't want to instead of because I couldn't and needed to rest.
Take away point here: Recovery IS possible and it WILL happen (except in circumstances where it doesn't... I'm not trying to minimize people who have much more difficult brain tumors than I did). Be patient with yourself and realize that healing takes an incredibly long time. I would imagine that even if you needed substantial therapy after brain surgery, you would eventually see similar improvement and results. I can definitely say that your skull heals and that is life changing in terms of what you are able to accomplish. But a healing skull takes about 12 weeks, and that feels like a really really long time.
Tracking Medicines Post-Surgery
This is a purely practical post. I had no idea how many medicines I would be taking after I got home from the hospital. There are the medicines you take to treat your condition, and then there are the medicines you take to balance out the negative effects of the medicines that treat your condition. I probably took three or four laxatives for several weeks. I took Pepcid. I had an oxycodone prescription, that sadly I had to use. I had dexamethasone (a steroid that reduces swelling in your head and face). I had an anticonvulsant. I had acetaminophen. After three weeks I had ibuprofen. So many medicines. And my brain wasn't working quite right to keep track of them all.
So here is your practical tip if you have to undergo brain surgery--get a blank notebook and write down every time you take medicine. Your will feel like your bedroom is a pharmacy for awhile. It may take months, but eventually you won't have to take so many medicines and you won't have to write them down. But at the beginning, write them down.
It's helpful to know when you took your last set of pills, but another benefit of writing down all your medicines is that you will be able to see when your pain was better or worse over time. My pain levels fluctuated, and I liked being able to look back and figure out what was going on with my body.
Apparently people can come away from brain surgery with terrible headaches for up to a year (or forever). I thought it was helpful to have my medicine list as a record of my pain. I took oxycodone very sparingly and after a month or so I took it back to a local pharmacy that provides medicine disposal. But I liked being able to distinguish when I was taking oxy versus acetaminophen versus ibuprofen, especially when I was living from one dose of pain meds to another.
For about two and a half months I feared that I would never be off pain meds. And then one night I woke up with terrible heartburn, and I worried that maybe taking so much Tylenol was hurting my system, so I cut back at lot. Thankfully at that point my head healed enough that I didn't need to take so much, and by about three months post-surgery I was not taking any pain medicine regularly. If this happens to you too, don't worry. Your head takes a long time to heal, and you will probably get headaches more frequently after surgery. It's okay, and it's okay to take medicine to keep you going when you need it. Just be sure to ask your doctor before taking any new medicines. You never know what type of adverse reactions could occur in your unique position.
So here is your practical tip if you have to undergo brain surgery--get a blank notebook and write down every time you take medicine. Your will feel like your bedroom is a pharmacy for awhile. It may take months, but eventually you won't have to take so many medicines and you won't have to write them down. But at the beginning, write them down.
It's helpful to know when you took your last set of pills, but another benefit of writing down all your medicines is that you will be able to see when your pain was better or worse over time. My pain levels fluctuated, and I liked being able to look back and figure out what was going on with my body.
Apparently people can come away from brain surgery with terrible headaches for up to a year (or forever). I thought it was helpful to have my medicine list as a record of my pain. I took oxycodone very sparingly and after a month or so I took it back to a local pharmacy that provides medicine disposal. But I liked being able to distinguish when I was taking oxy versus acetaminophen versus ibuprofen, especially when I was living from one dose of pain meds to another.
For about two and a half months I feared that I would never be off pain meds. And then one night I woke up with terrible heartburn, and I worried that maybe taking so much Tylenol was hurting my system, so I cut back at lot. Thankfully at that point my head healed enough that I didn't need to take so much, and by about three months post-surgery I was not taking any pain medicine regularly. If this happens to you too, don't worry. Your head takes a long time to heal, and you will probably get headaches more frequently after surgery. It's okay, and it's okay to take medicine to keep you going when you need it. Just be sure to ask your doctor before taking any new medicines. You never know what type of adverse reactions could occur in your unique position.
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.
Sunday, March 18, 2018
Hospital Stay
My surgery was on Tuesday, September 19th, and I think I went home on Saturday. My memory from this time period is so minimal. In fact, my memory of a good chunk of October is really minimal.
While I was in the hospital I wore a cap thing to protect my incision from becoming infected. Katie, the physician's assistant, came to check on me every morning. Residents came frequently. I had a drainage tube attached to my head, and I'm pretty sure the reason I had to stay until Saturday instead of going home on Friday was because my head was still draining a lot. My husband and I watched the non-animated version of Cinderella and another movie called Five Flights Up with Diane Keaton and Morgan Freeman. Don't ask me what the movie is about. I can't remember.
In the midst of all this inability to remember, I was able to put together that one of the residents went to the same medical school as one of my high school friends and that my high school friend taught a seminar this resident took. All I can say is that the brain is remarkable. Apparently my long-term memory was not affected by the surgery.
I was thrilled that walking was pretty manageable compared to trying to walk again after a c-section. I had had two c-sections before my brain surgery, so surgery to me meant struggling to poop and having a hard time walking. Thankfully these were not my problems after brain surgery.
The nurses gave me a ton of meds after my surgery, and I'm devoting an entire post to managing your medicine after surgery because it is really complicated. One of the amazing, glorious medicines that you get to take after brain surgery is dexamethasone. It's a steroid that reduces swelling in your head. Some people say it makes them want to eat a ton, but I think it left a really bad taste in my system and I hardly wanted to eat at all. Between the fact that the doctor cut through muscles that move when you chew (so I couldn't open my mouth wide for months) and the fact that everything tasted badly, I hardly ate for several weeks. They also had me on several kinds of laxatives, Pepcid, oxycodone (for pain), and who knows what else.
One day my husband brought our sons to the hospital to see me. I only remember that they came and we took a picture of me in my hospital bed with them.
And that's about it. The day I got home from the hospital, my cousin and his wife were in town so they came over for tacos. My cousin went to get me some See's Candy. And then I was so tired I went to bed before they left. The next several weeks I would sleep a lot, but I think that helps you get better.
While I was in the hospital I wore a cap thing to protect my incision from becoming infected. Katie, the physician's assistant, came to check on me every morning. Residents came frequently. I had a drainage tube attached to my head, and I'm pretty sure the reason I had to stay until Saturday instead of going home on Friday was because my head was still draining a lot. My husband and I watched the non-animated version of Cinderella and another movie called Five Flights Up with Diane Keaton and Morgan Freeman. Don't ask me what the movie is about. I can't remember.
In the midst of all this inability to remember, I was able to put together that one of the residents went to the same medical school as one of my high school friends and that my high school friend taught a seminar this resident took. All I can say is that the brain is remarkable. Apparently my long-term memory was not affected by the surgery.
I was thrilled that walking was pretty manageable compared to trying to walk again after a c-section. I had had two c-sections before my brain surgery, so surgery to me meant struggling to poop and having a hard time walking. Thankfully these were not my problems after brain surgery.
The nurses gave me a ton of meds after my surgery, and I'm devoting an entire post to managing your medicine after surgery because it is really complicated. One of the amazing, glorious medicines that you get to take after brain surgery is dexamethasone. It's a steroid that reduces swelling in your head. Some people say it makes them want to eat a ton, but I think it left a really bad taste in my system and I hardly wanted to eat at all. Between the fact that the doctor cut through muscles that move when you chew (so I couldn't open my mouth wide for months) and the fact that everything tasted badly, I hardly ate for several weeks. They also had me on several kinds of laxatives, Pepcid, oxycodone (for pain), and who knows what else.
One day my husband brought our sons to the hospital to see me. I only remember that they came and we took a picture of me in my hospital bed with them.
And that's about it. The day I got home from the hospital, my cousin and his wife were in town so they came over for tacos. My cousin went to get me some See's Candy. And then I was so tired I went to bed before they left. The next several weeks I would sleep a lot, but I think that helps you get better.
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
Friends Who Took Care of Me
I could write so many posts about the friends who took care of me during this process. If you have a brain tumor, you probably understand how awkward it is to start telling people you have a brain tumor. It completely kills the conversation. It makes everything about you. Not very many people can say, "Oh I had a brain tumor too!" Though you will start to find that many people can tell you about their aunt, uncle, cousin, friend, or someone they know on Facebook who also had a brain tumor. Even the EMT for my brother's football team had a brain tumor. I never thought about brain tumors until I had one, and then I felt like everyone knew someone with a brain tumor. Whether people have had personal or secondhand experience with brain tumors, people are generally empathetic. And some people went out of their way to be helpful and kind, especially on days when I absolutely felt alone and scared. Here are some examples, though this is far from being a complete list:
- She came to walk with me when I returned to Oregon, and when I couldn't walk, she brought me back to my house and talked with me until I felt better. After my surgery she came once a week for several weeks to help with my boys, my laundry, and other things around the house. She was there to listen to me and also to let me rest.
- When I was in the hospital in Utah, I texted a friend who had had brain surgery a few years prior. She was comforting and invited us over for dinner the day we got home from our trip. She made us a freezer meal, texted me and stopped by to make sure I was okay, brought me flowers for my porch, and asked for any tips I had when her sister-in-law was having brain surgery a few months after mine.
- When she heard about my brain tumor she immediately offered to bring dinner, called me at a time when I felt so desperately alone, walked to my house to say hi and bring a treat, took me for tortoise-slow walks during my recovery period, picked me up to go get a caramel apple spice and chat, shared stories about when her daughter had surgery right after birth, watched my boys, and did so many other things that I can't even remember.
- My friend who lost her newborn daughter a year earlier brought me a treat and beautiful flowers and texted throughout the process to see how I was doing.
- The women from my church organized a meal train to bring us 18 meals over a period of six weeks. People signed up for all 18 meals in less than 12 hours. Some women brought activities for my kids or special treats. We didn't even know all of these people before my surgery, and we were blessed with so many new friendships throughout the process.
- A friend and neighbor took me to my son's school several times before I could drive so I could pick him up. She became one of his favorite people, and now we swap treats whenever we have extras. She makes some of the best cinnamon rolls and is at the top of M's list if he needs a ride home from school.
- Another friend and neighbor came to my house to stay with my boys when I went in for surgery and came over several times at a moment's notice to stay with one or both boys if I had to go to the doctor.
- Another friend, neighbor, and mom of two little ones offered to watch my boys for several hours each day for weeks after I came home from the hospital because our nanny situation never worked out.
- My best friend from college has texted and called for months and sent us a gift card so we could pick up a few extra meals without a lot of preparation.
- A friend from high school sent a hilarious card that made me smile.
- People all across the world (literally) prayed for me. I felt loved and strengthened by so many prayers.
- A friend called me before my surgery and said, "I know people are going to help with meals, but I want to do something more for you. I have these times open in my schedule. Pick a time for me to come over each week and help you with whatever you need." This friend has health problems of her own, but went out of her way to help me when I couldn't even bend over.
I could go on, and at some point I probably will go on about all the ways people served me during this time. Friends have made this experience not only bearable, but valuable. It can be hard to be on the receiving end of service, but I have felt so loved and I feel closer to so many people because they have helped me so much.
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
What to Expect for an MRI of Your Brain
I've now had several brain MRIs in three or four different facilities, so I thought I would share what the experience is like. A lot of people are afraid of MRIs, and that's fair, but MRIs are also not the end of the world. I guess in a way I was lucky that I didn't have time to think about my first MRI. They just took me from my bed in the ER, down to radiology, and started the procedure. Some of my friends get claustrophobic during MRIs and need to be sedated, so they do their MRIs at night and go home to sleep it off. I'm at a point where I have a pretty good relationship with the MRI tech that I see every couple months, and we do pretty well every time I go in. I also need to say that you can have MRIs of other parts of your body, and I don't know anything about that. It could be better or worse than an MRI of the brain.
With any MRI, you will need to remove all metal from your clothing. No earrings, rings, underwire bras, jeans, etc. If you are in the hospital already, this is easy because they will put you in a hospital gown. If you are coming from home, it's a great day to wear yoga pants and a sports bra (or the male equivalent). During my last MRI, I forgot to take off my wedding ring. Several minutes into my MRI, I felt some tingling and a slight burn right around where my ring was on my finger. I called the tech in and told her, so we took it off. Apparently there is no problem if the ring is in the MRI room, but sometimes leaving a ring or other piece of metal on during the procedure can cause a burn (similar to a sunburn) where the metal is touching your body. This was uncomfortable, so be sure to remove all metal before your MRI.
You also have to answer a list of standard MRI questions before you start the procedure. These questions include information about whether or not you've ever worked with metal or have any metal inside your body. After my surgery I had no idea that I had a titanium plate in my head, so I went on my way saying there was no metal in my body. Later I found out I actually did have metal in my head, and now I put that on my MRI sheet. Obviously, if you have brain tumor surgery the doctors expect you to be getting MRIs for a long time, so they use a metal that is okay for MRIs.
When they call you back for the MRI, you lay on your back on a thin board (maybe 18-24 inches wide. The tech will put a cushion under your legs so they don't fall asleep or make your back hurt too much. Ask for a warm blanket (or two) so you don't get cold during the MRI. Some places just have you put your head in a certain spot and hope you don't move it. At OHSU they put a plastic piece over my head that can be a little bit overwhelming, though I am used to it now. Some hospitals and facilities will offer to let you listen to music or look at a picture of a tropical island or mountain range. MRI machines are incredibly loud, so if you do listen to music your ears are competing for what they hear. I loved having music during my first MRI, but since surgery music and the sounds of the MRI machine combined have been too much for my brain to handle.
The other thing a tech will do at some point during the MRI is thread a needle into your veins. Brain MRIs require a contrast injection so doctors can see if anything lights up in your brain. (Stuff lighting up in your brain is not a good thing--tumors and lesions light up.) The contrast can cause an allergic reaction. The first couple times I had contrast it made me sneeze, which of course means your head moves. Threading a needle can also be a painful experience. If you know you are having an MRI, drink lots of water in the 24 hours before so your veins are easier to see.
During the MRI there will be several short sequences, that I think can last 2-8 minutes. You'll hear banging, whizzing, and several other loud sounds even though you'll be wearing ear plugs and headphones. If you are lucky either the recording or the tech will tell you how many minutes each segment is. If no one is telling you, press your handy little button and ask the tech to tell you. Most of my MRIs have been about 45 minutes of taking images, about half before contrast and about half after. The fMRI was about double that.
When the MRI is done, the tech will come let you out. Don't sit up too quickly--you don't want to fall off the table. Personally, I'm fine after an MRI. I don't plan to do anything crazy on those days (or ever, let's be honest), but once my arm stops bleeding at the contrast injection site, there's no evidence that I've had an MRI. It's not the most fun thing, but it's not horrible either.
With any MRI, you will need to remove all metal from your clothing. No earrings, rings, underwire bras, jeans, etc. If you are in the hospital already, this is easy because they will put you in a hospital gown. If you are coming from home, it's a great day to wear yoga pants and a sports bra (or the male equivalent). During my last MRI, I forgot to take off my wedding ring. Several minutes into my MRI, I felt some tingling and a slight burn right around where my ring was on my finger. I called the tech in and told her, so we took it off. Apparently there is no problem if the ring is in the MRI room, but sometimes leaving a ring or other piece of metal on during the procedure can cause a burn (similar to a sunburn) where the metal is touching your body. This was uncomfortable, so be sure to remove all metal before your MRI.
You also have to answer a list of standard MRI questions before you start the procedure. These questions include information about whether or not you've ever worked with metal or have any metal inside your body. After my surgery I had no idea that I had a titanium plate in my head, so I went on my way saying there was no metal in my body. Later I found out I actually did have metal in my head, and now I put that on my MRI sheet. Obviously, if you have brain tumor surgery the doctors expect you to be getting MRIs for a long time, so they use a metal that is okay for MRIs.
When they call you back for the MRI, you lay on your back on a thin board (maybe 18-24 inches wide. The tech will put a cushion under your legs so they don't fall asleep or make your back hurt too much. Ask for a warm blanket (or two) so you don't get cold during the MRI. Some places just have you put your head in a certain spot and hope you don't move it. At OHSU they put a plastic piece over my head that can be a little bit overwhelming, though I am used to it now. Some hospitals and facilities will offer to let you listen to music or look at a picture of a tropical island or mountain range. MRI machines are incredibly loud, so if you do listen to music your ears are competing for what they hear. I loved having music during my first MRI, but since surgery music and the sounds of the MRI machine combined have been too much for my brain to handle.
The other thing a tech will do at some point during the MRI is thread a needle into your veins. Brain MRIs require a contrast injection so doctors can see if anything lights up in your brain. (Stuff lighting up in your brain is not a good thing--tumors and lesions light up.) The contrast can cause an allergic reaction. The first couple times I had contrast it made me sneeze, which of course means your head moves. Threading a needle can also be a painful experience. If you know you are having an MRI, drink lots of water in the 24 hours before so your veins are easier to see.
During the MRI there will be several short sequences, that I think can last 2-8 minutes. You'll hear banging, whizzing, and several other loud sounds even though you'll be wearing ear plugs and headphones. If you are lucky either the recording or the tech will tell you how many minutes each segment is. If no one is telling you, press your handy little button and ask the tech to tell you. Most of my MRIs have been about 45 minutes of taking images, about half before contrast and about half after. The fMRI was about double that.
When the MRI is done, the tech will come let you out. Don't sit up too quickly--you don't want to fall off the table. Personally, I'm fine after an MRI. I don't plan to do anything crazy on those days (or ever, let's be honest), but once my arm stops bleeding at the contrast injection site, there's no evidence that I've had an MRI. It's not the most fun thing, but it's not horrible either.
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.
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