Hope Kulin is a wife and mother, who also happens to be a brain cancer survivor, candidly sharing her experience the good, bad, and ugly.
A Patient's Perspective
I want to make sure, before I begin, that it is 100% clear that I am not a doctor in any way, shape, or form. I did graduate from college many years ago, in another life, with a degree in Sports Medicine and a minor in Exercise Physiology—but none of what I am going to write about has any relation to this whatsoever.
I write this because when I had my surgery, and in the six years since, I have come to find that while there are many people who have been through what I have, there is relatively little cohesive information out there that is written from a patient perspective. While I cannot say that everything I write will be cohesive at all times, I am using this platform as a way to get as much information as possible in one location if someone ever chooses to look for it.
Apples to Apples
We all like to believe we are special, and in many ways we are; however, the reality is that we are all very much alike. This is good news and bad news. For those of us who have to deal with a brain tumor, it is nice to know we are not alone in our issues, but it is important to make sure we are looking at the same issues. Unfortunately, what I have dealt with is becoming more and more common. When I was diagnosed in 2010 there were fewer than 2,000 cases like mine in all of 2009, but by the time I went in for my first-year review there were already 2,000 cases by the month of April.
My tumor was in my right temporal lobe, approximately an inch in from my ear and 3 cm—roughly the size of a golf ball. It was in a part of my brain considered the "silent" part of the brain, meaning the doctors told me I would not even know the difference. They were wrong.
I am right-handed. This means that my right temporal lobe is responsible for my memory and thought function. My left temporal lobe is responsible for my motor function. I have been told that had I been left-handed my left temporal lobe would be more responsible for memory, and my right temporal lobe would do more with motor function.
I never had any headaches. This is because my tumor was primary. It literally took over brain matter instead of growing and making space for itself within my brain. This is why my only option was surgery. Chemo or radiation would not shrink it; the brain matter was already affected—or perhaps more accurately, destroyed.
The surgery consisted of a full craniotomony. In layman's terms they shaved my head, cut my scalp from my temple around the back of the head and back up to my ear so they could pull the scalp away, and cut the same opening into my skull. They then cut an inch into my brain and cut out the brain matter.
Let me begin by saying that my doctor did do an amazing job. He was a jerk, but keep in mind that if you are having brain surgery you want someone who has a God complex. If they don't, you don't want them cutting into your head.
Do not expect your neurosurgeon to get to know you, have a deep conversation with you, or have any contact that is not absolutely necessary (and not much is necessary). In order to be effective at their jobs they cannot get to close to patients. The reality is that it is VERY likely that there will be long-lasting negative repercussions, no matter how good, or even phenomenal, your surgeon is.
If you are looking for a friend, your neurosurgeon should not be that friend. In order to do their job there must be some distance for them to keep their sanity.
Immediately Following Surgery
I have been told I was trying to get up immediately after surgery. My first memory was looking at my husband and telling him, "I know you, and I know Samantha." This is our daughter. The next real memory was not understanding why the nurses kept asking me what time it was. I did not know how blessed I was to know how to tell time after what I had just gone through.
The next shock occurred when they removed the skull cap. The name of my surgery was a "stealth reduction of a mass in the right temporal lobe." As I described above, the surgery was not stealth. It sounds stupid now, but I was shocked to realize that "stealth" meant that my hair would eventually grow back and cover the scar.
Realizing the Realities
After surgery, and after talking to many many doctors, I have come to a major conclusion... Doctors have very limited knowledge about the brain, how it works, or what the effects of your surgery will be. If you are right-handed like me and have surgery on the right side, please listen to those who love you about the actual repercussions of your surgery. The right temporal lobe is responsible for memory, which means that you will often be completely unaware of how inaccurate your memories are. This is the hardest part for anyone going through memory or cognitive issues, in my opinion. I distinctly remember many things—the problem is that they do not match my husband's memory of the same events. This causes a tremendous amount of anger and frustration on both of our parts, his more so than my own.
Realize that no matter what they tell you ahead of time, there is no way they will know the repercussions of going in and rooting around in your brain. There is simply too much that is unknown about how the brain works and how it is connected. There WILL be repercussions to the surgery, they will be severe, and they will be life-long. The brain does not heal, but it can reroute itself, which also causes its own set of complications. Know going in that while surgery maybe your only option, as it was in my case, it is also not the same as surgery on another part of your body. In other parts of the body it is easy to see where the disconnect is and make alterations for it. In the brain, there is no way of doing this. Even EEG's will only say that the brain waves are abnormal, which is not much help.
Get Help Immediately for the Entire Family
Be prepared for extensive therapy after surgery. The diagnosis of cancer alone is enough reason for family members to receive counseling. Counseling is not something to be afraid of, nor is it something to avoid, as I did at the beginning. Counseling is not only for the person who had the surgery, either. Counseling is necessary for everyone in the family, which will be explained further in another article, but I can assure you that everyone in the family is affected by the diagnosis—and however you emerge from the surgery.
There are many types of counselors available. Some will be a fit, others will not. Do not be afraid to try multiple providers until you find the one that is a fit for you. Personally, I looked through the church; there are many resources available there. If you are more interested in secular resources, that is viable as well. Just make sure you get help from a licensed provider. Friends are great, but there will be things you simply cannot say even to those you love the most—precisely because you love them the most, and some things will be painful and embarrassing.
Be prepared for everything you said you would never do, or your spouse said he or she would never do, to go out the window. These are times of crisis, and mistakes will be made by both of you. Be ready to forgive and move forward when the time of crisis has passed. If you are not able to forgive and move forward, be prepared for a whole new crisis to take its place.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.