I purposefully have not made this blog easy to find. If it were about something more mundane, I either wouldn't write it or I would post it on Facebook because, who cares, it wouldn't really offend anyone. But for some reason the topic of brain tumors simultaneously makes me feel unusually burdened and incredibly grateful. I don't know how I survived my surgery and all the challenges that went with it, but I also feel so lucky because I know how much worse it could have been. So, who am I to talk about my journey or my path?
If anyone finds this blog--because right now I don't think I will ever share it broadly--I want to make a big disclaimer. This is merely my story. And in some ways it was awful, and in some ways it was wonderful, and in many ways it is far from being over. I just finished reading Everybody Needs a Brain Tumor by David Koelliker. He has struggled with a brain tumor for over eight years now. He has had three brain surgeries, a clinical trial (vaccine therapy), radiation, and chemo. He didn't go into a lot of detail about his first two surgeries, but from details he shared, it sounds like his recovery from those surgeries went FAR better, or at least faster, than my surgery and recovery. He was flying, going back to work, going on a trip, walking quite a bit, etc. within weeks of his surgery. I was in bed. For months. And I wanted so badly to be out living my life--I would try and then get knocked WAY back down whenever I tried. But now David has had a third surgery and his astrocytoma has perhaps progressed into being a glioblastoma (he's not explicit about this). His third surgery left him with a 37-day hospital stay, vision loss, paralysis, and loads of therapy. I can't compare. I haven't (knowingly) lived with this for eight years yet, so that might be me too. Gosh that is scary. In eight years my youngest will only be 10. I want to be fully functional so much longer than that. I want to be his involved, active mom so much longer than that. I have plans and goals and things I want to accomplish, groups of people I want to help, trips I want to take with my husband, things I want to teach my kids. Please God, please let me live longer than that.
I have an MRI this week. I'm nervous. What if you can see my tumor on this one? What if I was wrong to stop chemo? What will this new neurooncologist be like? This week is that time when I want to start researching statistics and try to predict what my future holds. It's when I have to remind myself that any of us could die tomorrow even if we are super healthy today. It's when I have to remember that God doesn't deal in probabilities.
Part of why I wanted to write this blog was to say that the recovery from brain surgery is horrible, but that it does get better after a long time. And part of why I wanted to write this blog was to say that temozolomide,that so-called mild form of chemo they give brain cancer patients, is really pretty awful. And that it is okay to think all of that stuff is awful and horrific, because at least one person (or many people) in this whole process are going to tell you how HAPPY you should be about your situation.
But in all my realism about how awful it is to have a brain tumor, I don't want to leave anyone with the impression that I think I have it worse than anyone else. If anything, having a brain tumor has taught me how bad other people have it. I don't think you can know how horrible it is to have chemo for a year until 1) you've actually done it for a year, but a close second, 2) you've done it for a few months. You can't imagine what the drugs must do to your body until you get one infection after another and can't get out of bed. You can't imagine trying to walk after brain surgery until you feel the aggravating and excruciating pain that reverberates through your skull when you try to move faster than a snail two and a half months post-surgery.
This blog is just my taste of brain cancer and certainly not an authority on the topic and certainly not the worst that anyone suffers from this disease. It's just my story, and I guess, really written for my benefit.
Sunday, April 8, 2018
Friday, March 30, 2018
Do I Have Cancer?
This question has been so hard to answer, even if I'm only talking to myself. From a purely technical standpoint, the answer is yes. Cancer is "the disease caused by an uncontrolled division of abnormal cells in a part of the body." That was me. I had that. And the Director of the USC Norris Comprehensive Cancer Center told me if I wanted to I could rightfully call my situation cancer. And certainly without surgery my tumor was on its way to becoming far worse--first a grade III anaplastic tumor, and after that a grade IV glioblastoma. No one has a surer claim to saying they have cancer than a glioblastoma patient. It kills you. Period. But that's the problem for me--I've always thought of cancer being something that kills you or comes darn near close to killing you, and so many surgeons that I talked to in this process made my tumor sound so optimistic. Can a tumor really be optimistic? How can you say you have cancer if you have an optimistic form of cancer?
Then there is the issue of chemotherapy and radiation. Aren't those treatments required to say you have cancer? Not necessarily. My father-in-law had prostate cancer (which no one doubts or wonders about before declaring him a cancer survivor) and he did not have radiation or chemotherapy for his treatment. He didn't even have surgery. My grandfather had FOUR types of cancer and never had radiation or chemo. And then I also have to wonder about my situation because I did have four rounds of chemotherapy, and they were awful. But the oncologist kept swearing up and down how damn mild those treatments were. Mild? Why downplay it? I was dysfunctional for months because of those treatments. I know people who were treated for colon cancer and could still go to work while on chemo. I could barely get out of bed some days. But if you bring that up the doctor just calls you weak and makes you feel like you better hope and pray you never get another form of cancer (which I do, but I don't think that makes me weak, everyone should hope and pray they never get cancer).
There's the question of present versus past tense. Even if I did have cancer while my tumor was in my head, do I still have it? Am I a brain cancer patient or a brain cancer survivor? How long do you have to be "free of brain cancer" before you can call yourself a survivor? The doctors say I still have some tumor cells in me though we can't see them. How much tumor needs to be in your head for you to say that you still have the tumor? Are you still a survivor if your tumor grows back? Can your tumor really beat you, and is that an effective way of thinking about your tumor?
Part of the problem is also that I'm saying "brain cancer" or "brain tumor" when I talk about what I've been through. The brain is a huge deal. I am not at all downplaying cancer in any other part of the body. We've already established that I struggle with considering myself a cancer patient or victim or anything like that. But, if I hear someone say they had breast cancer or that they had a melanoma, I don't think twice about calling them a cancer survivor or a cancer patient. At Thanksgiving dinner a couple years ago my husband's cousins (all in their 30s-young 40s) talked about their health experiences of the past year. One was grateful to have caught and been treated for testicular cancer. Another had experienced thyroid cancer treatment. I didn't doubt their stories or experiences at all. In fact I was thinking something along the lines of, "I don't know what I'd do if that happened to me. Does this really happen to people who are so young?" But I feel like if you are in a room and you say that you had brain cancer people think you are just trying to play a trump card. That, or you should be in the morgue.
And then I feel guilty. For being alive. For not being in the hospital. For going back to work. For rocking my toddler to sleep. For walking six miles. That's not cancer. But also, to a certain extent, I'm in denial that I spent five to six months of my life (plus some months pre-surgery) just recovering. Sleeping. Resting. Closing my eyes. Staring at the wall while my brain healed. I did all those things, but it is such a far cry from where I am today. Last month's sorrows and frustrations and fatigue even seem so far away. How did life change so quickly? How did I get better?
So, here I am, a cancer survivor (for now, right?) and still a cancer patient under strict monitoring every two months. At the same time, I'm realizing how far we've come with medicine. Cancer does not mean imminent death or even future death from cancer. It's a chronic disease and millions of people live with it. In some cases, there are certainly worse outcomes, and as horrible as brain cancer has been, there are certainly other diseases that I feel would be more difficult to live with.
Then there is the issue of chemotherapy and radiation. Aren't those treatments required to say you have cancer? Not necessarily. My father-in-law had prostate cancer (which no one doubts or wonders about before declaring him a cancer survivor) and he did not have radiation or chemotherapy for his treatment. He didn't even have surgery. My grandfather had FOUR types of cancer and never had radiation or chemo. And then I also have to wonder about my situation because I did have four rounds of chemotherapy, and they were awful. But the oncologist kept swearing up and down how damn mild those treatments were. Mild? Why downplay it? I was dysfunctional for months because of those treatments. I know people who were treated for colon cancer and could still go to work while on chemo. I could barely get out of bed some days. But if you bring that up the doctor just calls you weak and makes you feel like you better hope and pray you never get another form of cancer (which I do, but I don't think that makes me weak, everyone should hope and pray they never get cancer).
There's the question of present versus past tense. Even if I did have cancer while my tumor was in my head, do I still have it? Am I a brain cancer patient or a brain cancer survivor? How long do you have to be "free of brain cancer" before you can call yourself a survivor? The doctors say I still have some tumor cells in me though we can't see them. How much tumor needs to be in your head for you to say that you still have the tumor? Are you still a survivor if your tumor grows back? Can your tumor really beat you, and is that an effective way of thinking about your tumor?
Part of the problem is also that I'm saying "brain cancer" or "brain tumor" when I talk about what I've been through. The brain is a huge deal. I am not at all downplaying cancer in any other part of the body. We've already established that I struggle with considering myself a cancer patient or victim or anything like that. But, if I hear someone say they had breast cancer or that they had a melanoma, I don't think twice about calling them a cancer survivor or a cancer patient. At Thanksgiving dinner a couple years ago my husband's cousins (all in their 30s-young 40s) talked about their health experiences of the past year. One was grateful to have caught and been treated for testicular cancer. Another had experienced thyroid cancer treatment. I didn't doubt their stories or experiences at all. In fact I was thinking something along the lines of, "I don't know what I'd do if that happened to me. Does this really happen to people who are so young?" But I feel like if you are in a room and you say that you had brain cancer people think you are just trying to play a trump card. That, or you should be in the morgue.
And then I feel guilty. For being alive. For not being in the hospital. For going back to work. For rocking my toddler to sleep. For walking six miles. That's not cancer. But also, to a certain extent, I'm in denial that I spent five to six months of my life (plus some months pre-surgery) just recovering. Sleeping. Resting. Closing my eyes. Staring at the wall while my brain healed. I did all those things, but it is such a far cry from where I am today. Last month's sorrows and frustrations and fatigue even seem so far away. How did life change so quickly? How did I get better?
So, here I am, a cancer survivor (for now, right?) and still a cancer patient under strict monitoring every two months. At the same time, I'm realizing how far we've come with medicine. Cancer does not mean imminent death or even future death from cancer. It's a chronic disease and millions of people live with it. In some cases, there are certainly worse outcomes, and as horrible as brain cancer has been, there are certainly other diseases that I feel would be more difficult to live with.
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.
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