What Brain Surgery is Like and How I Am Doing
So I had brain surgery on the first of February. And now it’s nearly been six weeks.
After the surgery, I realized I should write a simple narrative about the whole experience. When I trying to figure out what I facing, I found similar stories either irrelevant, totally freaky, or just plain non-existent. I realize this is way more information that most of my friends and acquaintances want and I totally get that. You are not obligated in any way to read this. But I did want to put it out there so if someone is looking for more information, it’s here (because the internet is awesome like that). This is my part to make it better for someone else. And since I wrote this earlier, I’ve updated it with the most recent news where appropriate.
Brain surgery is bizarre. Say it out loud – it even sounds strange.
Sometime in the middle of November 2009, I woke up to a killer headache. I don’t have migraines, but thought I was developing one. Sure enough, I even had what I believed was an “aura,” a short time of blurred vision and sensitivity. The headache would not respond to any medication and lasted for several days. Again, we thought it was just a migraine.
Finally, I had enough and saw my doctor for something that would JUST MAKE IT DIE ALREADY. She gave me Tylenol with codeine, which did nothing, and scheduled me for a CT scan on Friday, November 20th, to be safe.
I’m so grateful she did. Friday came and I had to take my son to the pediatrician that morning. My head was hurting, and Nate proved to be a handful and a half at the doctor. Finally, we got to the hospital for the scan. I was a basket case since I had to go alone, but it was quick and painless. We left to make a quick stop at the library and while I was checking out, my phone rang. I picked it up right in front of the librarian (!!) and in about 20 seconds, my world changed.
It was my doctor saying that they had found a “mass” in my brain and would I please go to the hospital immediately because they wanted a MRI? I do remember the word benign was used, but my word, that really doesn’t soften the blow much.
The rest of the day was spent in panic, trying to find a sitter for Nate (thanks, Michael!) and literally begging the MRI technicians to please wait until my husband Daniel could be with me. Late that night, we got a more specific diagnoses: it was likely a benign cyst or lesion and there was no emergency. I was to see a neurosurgeon for an upcoming surgery. I felt so relieved. When you are discussing brain masses, a cyst is an excellent one to have.
Later, the neurosurgeons (I have two – collecting doctors is an expensive hobby!) thought it was a benign tumor called an epidermoid, which is made of skin cells. I spent three months under the care of them and an ENT (ear, nose, and throat doctor), who diagnosed me with Meneire’s Disease, a type of vertigo. Turns out, my tumor was mostly asymptomatic and discovering it was most likely a total fluke.
We had two choices for hospitals (and corresponding surgeons) and chose the one we felt the most comfortable with. My main surgeon is conservative, in a good way, and it ended up being a very good choice post-surgery.
Because the doctors felt I was in no immediate danger, I was scheduled for a craniotomy, tumor biopsy, and resection at Fairfax Hospital on February 1. During the six weeks of waiting, I was able to enjoy the holidays with my family in a very normal way and spend a lot of time with my husband and son. I loved having that time, but it wasn’t easy. I was nervous about the surgery and the possible side effects.
The end of January 2010 rolled around and both my parents and in-laws came into town to be there and help take care of our one year old. The closer I got to the actual surgery date, the calmer I was. I was prepared and ready to have it behind me.
The hospital told us to be there at 5 am, so I knew I wasn’t going to get much sleep. That fact was confirmed when our son was up the whole night with a cold – nobody got any sleep! We drove to the hospital already tired, but found the place empty. It was bitterly cold out (one degree), and thought that the weather had delayed the staff. But no, they were just eager to not have us be late. So we waited for a while and then I was called in for a pre-surgical MRI. I must have fallen asleep during the procedure, because it was over before I knew it and another nurse was there, telling me to put on a surgical gown and get in the wheelchair.
I freaked for a minute because I thought there would be some time in-between the MRI and the surgery where I could talk with my husband, parents, and father-in-law. But everyone was behind schedule, so into the pre-op room I went (rolled). I was stressed at this point for a couple of reasons: 1) it was very cold and I was wearing next to nothing with nothing accessorizing it 2) I didn’t have a chance to see my parents because only one person was allowed in the pre-op room 3) things were going quickly and it was BRAIN SURGERY, for pete’s sake.
Thankfully, the answers for these problems came quickly: 1) a very kind nurse covered me in blankets from an oven. AN OVEN FILLED WITH BLANKETS. It was heaven. 2) the nurses made an exception and allowed everyone to come into the pre-op room and 3) the doctors, nurses, and residents all were professional and caring,which helped calm me down.
And they had a miracle drug.
Before the actual surgery date, I was scared of walking into the operating room on my own and laying down on the table. You know, like a sacrificial lamb. “Here I am, doc, cut me open now.” Not cool.
Thankfully, medicine is modern now, and they knew that I would be scared of that. So before I even left the pre-op room, the anesthesiologist gave me me something in my IV. I didn’t know what it was, but I just remember thinking “Wow, I’m drowsy now.” And that’s it. I don’t remember kissing Daniel goodbye. I don’t remember going into the OR or them putting me under. The next thing I remember, I was waking up in recovery.
I LOVE THAT. The not remembering part, not the recovery part.
Because recovery sucks. Badly.
I remember noise and nurses and a nasal cannula. I thought Daniel and my parents were in the room, but it was just the meds. There were tubes everywhere: a catheter, two IVs, oxygen, morphine drip, muscle pumps, and automatic blood pressure cuff.
I asked the nurse if it would get easier. She said yes and I thought “Ok, then. I can do this.”
It did and I did. Sometime in there, I had another MRI and my surgeon came in to say that 40% of the tumor was still there and that it wasn’t benign.
I knew. I don’t know how, but I remember not being surprised. Maybe it’s the drugs, but I don’t think so.
I spent three and a half days in the hospital and met a woman who was convinced the nurses had kidnapped her from Penney’s, several kind nurses, one very not-bright nurse, a screaming roommate, another screaming hallway-mate, and one resident who woke me up at 5 to rip the bandage out of my hair.
There were no complications and I was allowed to go home after three and a half days. Everyone seemed surprised at how well I was doing. Mostly, I was upset that I couldn’t take a bath by myself and had to take the IV pole to the bathroom.
The transition to home was a bit more difficult that I thought it would be. When we were leaving, I told my husband I wanted McDonald’s to go. That changed when I hit the outdoor air – suddenly, I felt weak and queasy. Compared to the other people in the hosital, I was doing great, but the reality was, I was recovering from major surgery and I had a long ways to go before doing anything normal.
So, I slept, ate very little (the strong medications made everything taste off), and slept some more. Sleeping was difficult, with one side of my head very sensitive and the other hurting. The steroids (to prevent infection or meningitis) also gave me intense, frightening dreams. But I was tired and weak, and that helped.
A few things surprised me about recovery: one, the strange side effects of the medication. If I took a full dose, my skin crawled. They messed with my internal temperature. I was sweating and freezing at the same time. They also woke me up at exactly 6 am every morning.
Two, how surgery on one side of my head left marks literally all over my body. I had bruises and scrapes on both sides of my head and near punctures in both ears. There was a scrape on my back, huge bruises on both wrists from failed IV attempts, bruises from blood thinning shots on my belly and IV marks on my chest and feet. Brain surgery is, apparently, a full contact sport.
Three, how weak I feel. My legs are like jelly a lot of the time, though they seem to be getting better. I tried to do simple housework this week and it was exhausting. I find it very difficult to think through something like cooking. Just yesterday, I did a load of laundry without any soap. It’s like being pregnant, except worse (and no, I’m not).
And then there is the waiting. That’s the worst. The surgeon told me that the tumor was a glioma – which wasn’t good news. From my research, I knew that meant malignancy. Tumors are graded (one through four, with four being very bad) – and he wouldn’t know the grade until the pathology report was in.
So we waited and waited and prayed and waited. The chances were very good it would be a level three or four tumor. But I was continuously reminded that I didn’t know what it was and that for now, I had the grace I needed. And I really did. Of course, there were meltdown/freak out moments, but there was peace.
Finally, on the 12th, the surgeon called. They had the results and could I come in a couple of hours?
Hello, stress. But God was gracious and we were told it was a level two astrocytoma. It is incurable (not completely removable), but slow growing, meaning I’m not in immediate danger. The surgeon said it could grow or change levels, creating a big problem, but for now, I was ok. I do have the option of one round of radiation to shrink what is left – we’re still getting information on this.
It was good news, at least in the short term. I could live for many years with this tumor just sitting there. I could also live for a few years and then discover that there isn’t much time left. There’s no way of knowing.
**SIX WEEK UPDATE**
(After consulting with radiation and chemotherapy oncologists, the consensus seems to be that I should not pursue radiation or any other treatment at this time. Because the tumor is on my brain stem, I can only undergo radiation once. Therefore, it is being saved for when it metastasizes into something more dangerous. We are getting a second opinion on everything, but for now, this seems clear.
I also seem to have little to no side effects of the surgery. I had moderate hearing loss afterwards, but it seems to be better – that will be tested months from now. I’m expecting there to be some permanent loss, especially since my auditory nerve is directly in the way of the tumor. I also find myself with an occasional speech impediment. Certain words are very difficult to come up with – my brain does not seem to know what they are. But all this is minor and doesn’t bother me. If it continues, I might see a therapist.
I’m also feeling much more normal. 15 days after open brain surgery, I drove in the snow without any side effects. I think that’s a medical marvel. It took about a month for me to to feel more like myself and six weeks for me to hold my son without my head hurting. I do have a bald spot on my neck and head, but 90% of it is hidden – most people never notice it. My scar is about 6-8 inches long and is bumpy and raised, which I’m not thrilled about it, but it doesn’t bother me too much. The four to six weeks range of healing seems to be very accurate.)
So how am I?
The uncertainty is unnerving. I want an answer, but cancer doesn’t give that. This is cancer. Really. It doesn’t seem real, but it is. I have brain cancer and I will have it as long as I live.
I’ve been following a pastor from Texas named Matt Chandler. He was diagnosed with a similar, but higher grade, brain tumor the same week I was. In his latest update, Chandler talks about what it means to be “cured” in the world of brain tumors: living as long as God gives.
And since I’m thinking about the reality of the unknown future, I was struck by the passage he referenced in Psalm 90.
9For all our days pass away under your wrath;
we bring our years to an end like a sigh.
10The years of our life are seventy,
or even by reason of strength eighty;
yet their span[c] is but toil and trouble;
they are soon gone, and we fly away.
11Who considers the power of your anger,
and your wrath according to the fear of you?
12(T) So teach us to number our days
that we may get a heart of wisdom.
13(U) Return, O LORD!(V) How long?
Have(W) pity on your servants!
14Satisfy us in the(X) morning with your steadfast love,
that we may(Y) rejoice and be glad all our days.
15Make us glad for as many days as you have(Z) afflicted us,
and for as many years as we have seen evil.
16Let your(AA) work be shown to your servants,
and your glorious power to their children.
17Let the(AB) favor[d] of the Lord our God be upon us,
and establish(AC) the work of our hands upon us;
yes, establish the work of our hands!
Nobody knows how many years they will live. We tend to forget that and assume that because we don’t have the word “cancer” hanging over our heads, that everything will continue on as normal indefinitely.
It won’t. Someday, we will both face the unknown.
And now, the test begins. Can I face the unknown and still see God’s hand? So far, I can. And as our pastor reminded Daniel and I recently, I don’t have to have faith for the future. I just have to have faith for right now.
And for right now, I’m ok with just now, most of the time. I can say that God is good, even if cancer isn’t. I do often get frustrated at how unfair this is and why it happened to me. And then, I get a glimpse of a bigger perspective from something: reading my Bible, talking with Daniel, or making something for my son, and I’m happy. Really truly happy.
I think that tension will always be there – the tears together with the joy, the frustration and the normalcy. It’s not the way I want it, but I can see the grace in it. And I’m grateful for that grace (most of the time).
And that’s how I am. Really.