Today marks the second anniversary of my craniotomy.  Honestly, it’s a bitter sweet day.  I’m grateful to be alive, grateful that treatment worked enough to put me in the position I am in.  But, I also feel like I should be farther along.  I should be “better-er.”   I think most people in my position feel this way.  I feel lucky to be alive at all when so many other people I’ve met on this journey aren’t anymore.

At the same time I feel so much doubt over what I’m doing with these years.  Am I doing enough?  Since my life will likely be shorter rather than longer, am I squandering these “good” years?  Am I doing what I’m supposed to do?

The truth is that I don’t have any concrete answers.  I have struggled and continue to do so.  I fight with myself over what I am able to do and being happy for it and not disappointed in myself.  I agonize over what other people must think of me.  But, at the end of the day I come back to some thoughts that bring me back around.

No one is guaranteed the years.  I remind myself that I am doing what good I can in the way that I can.  I am spending my time, however long it may be, with the people I love and love me.  We are living a normal life and not forcing making memories.  I am still the intelligent person I was before I knew there was a mass in my brain.  I am still loved by the people who matter to me.

Anniversaries are important in some ways.  They help us mark big moments in our lives.  But, my surgery anniversary needs to be more like my marriage anniversary.  It needs to be something marked and perhaps celebrated, because what I’ve been through is worth celebrating.  It needs to be less of a benchmark of what I “should” be doing and more of a celebration of where I am.  Every year when my marriage anniversary rolls around we celebrate, but neither of us berate ourselves because we haven’t met some false goals couples should hit by 5, 10, or 20 years.  We just celebrate that we have been given another year together.

I am going to endeavor to look at my surgery anniversary the same way.  It isn’t a day to look back and mourn the things I cannot change, though I’ve tried.  It should be a day that I look back and see the hills I’ve climbed and the people who helped me.  It should be a time to look forward to the time I will have.

I feel like I’ve hit a point with this blog that I’ve written all the things I really wanted to put out there.  I knew when I started this that I would eventually come to the place where there wasn’t going to be content for 2 or 3 posts a week.  My plan for this place is simple.  I’m going to leave it up in perpetuity for other people who might need it to find.  I’m planning on updating it when I think of something new to say or I have a health update.  I only see my doctor every 6 months, so updates will come about that frequently.

If somehow you ended up at this blog and you or someone you love is dealing with brain cancer, I hope you find some help here.  Please feel free to comment or email me at

je*@th**********.com











.  I read everything and check it every day so no question will go unanswered.  Even if you aren’t dealing with a tumor and you have something to say, feel free.

Thank you for reading these crazy thoughts and my story.  I hope it shed some light on a type of cancer that doesn’t generally see the spotlight.  My next MRI will be sometime around December or January, so I’ll post for sure then!

Many people have told me that my blog has really informed them on what happens when someone gets a brain tumor.  I think that is really awesome.  That is secondary purpose of this place.  The primary objective is to reach and help people going through cancer.  But, informing the people that love us is extremely important and helpful.  Do you 3 people who read this have any questions?  You should comment or email them to me.  I’ll give them a go at answering them.  Bear in mind that I am, at best, a semi-professional.  I wanted to address a few common questions I got when I was going through treatment.

Are you awake during brain surgery?

The answer here is maybe.  I was not, and the majority of people are anesthetized for the entire procedure.  Generally, awake craniotomies are only performed at large brain surgery centers and large academic institutions.  I participated in at least 100 brain surgeries during my 6 years in the OR and not one was done awake.  It’s not very common outside of large surgery centers.  The type and location of the tumor dictate if a procedure will be done awake, and most surgeons in outlying places would refer a patient who needed that to a major center.

Can you stick magnets to the plate in your head?

Disappointingly, no.   The plates for your skull are made of titanium and are MRI safe.  That’s a wonderful thing because I imagine having your plates try to fly out of your skull during followup MRIs would be terrifying.  Also, if the bone flap used to access the brain is kept you end up with a series of small plates holding it back on.  The exact types of plates will depend on your doctor’s preference.  If for some reason the bone flap is not able to be kept or used, generally a large mesh plate and possibly cranioplasty cement can be used to correct the defect.

Can you feel the plates?

Yep.  If you were to feel my head you would feel where the plates are.  You could see their outline a little too if my head was shaved.  When it gets super cold during the winter I have to make sure to wear a hat because they hurt a little.  I also can hear them kind of move when I roll over in bed.  It is the freakiest thing.

Does your brain just pop back out to fill the hole?

Not in most cases.  If you have a tumor of the meningeal tissue that is pressing on your glial tissue I suppose it could re-expand to fill that defect.  My tumor was a tumor of the astrocytes, which are glial cells.  The cancer fundamentally changes the effected cells into cancer cells.  The healthy cells don’t exist there anymore.  So after the tumor is removed there aren’t healthy cells to pop back out into the hole.  Most tumor spaces will fill with cerebrospinal fluid (CSF) which is the fluid that surrounds the the brain and spinal cord.

These are just a few of the questions that I felt were kind of common.  If you’re reading this and have any other serious or not so serious questions, comment and ask them or email me.  I will answer anything I can as best as I can.

Magnetic resonance imaging.  As a brain tumor patient you will be enjoying many of these for the rest of your life.  It’s best to go ahead and embrace them.  MRI is an imaging technique that uses radio waves, magnetic fields, and field gradients to map the body.   It can see inside your body, including into your skull, to map tissue without the use of radiation.  Which is nice because if MRIs had radiation in them I’d be glowing by now.  It started being used in the 1970s and is the top choice for neurological imaging because it offers more detail and a clearer picture of the brain than other imaging studies.

I’ll stop being pedantic now because I got most of this info off of Wikipedia and you guys have Google too.  The key aspect of MRI as a patient having the study is that it is magnetic.  This means that you need to declare any metal in your body before your first MRI so that they can figure out if it’s MRI safe.  I have a permanent retainer cemented to the back of my lower teeth so the first time I had an MRI I told them about it and it was quickly determined to not be an issue.  Now I have plates in my head, but those are made to be MRI safe so they raise no new concerns.

There are open MRI machines now and even ones where you  can sit up instead of laying down.  But, at the imaging center I use they don’t have such fancy things.  Some people really get claustrophobic and end up needing to be sedated for an MRI.  In fact before my first one ever I think 3 people asked me if I had trouble with tight spaces.  I finally asked what would happen if I said yes.  I was told that they would cancel me at the outpatient imaging center and reschedule me for another day at the main hospital.  Yeah, I had been waiting a couple weeks for that MRI at that point so I was not about to need sedation.  Everything turned out fine for me.  I would heavily encourage you to speak up when you schedule your MRI if you think it will be a problem for you.

One thing about me is that I have really terrible vision.  Usually that’s a bummer, until I needed an MRI.  It’s hard to be afraid of what you can’t see.  I have to take my glasses off right after I enter the MRI suite and put them on a window ledge in the room so they don’t mess up the scan or fly off my face in some terrifying fashion.  Once my glasses are off everything is just moving blobs of color.

I have taken a sleep mask with me to every MRI I have ever had.  It’s a silk and cotton one with no metal.  The no metal part is critical for obvious reasons.  You can also ask for a washcloth or something to put over your eyes if you don’t want to see inside the machine.  I choose to live with that mystery.  I am a crazy person who carries my MRI mask with me pretty much all the time in my purse.  Just in case I guess?  I don’t know why I do it, but I know I feel better knowing it’s nearby.

You gotta dress for the occasion.  There are so many reasons for this.  I have been told by my MRI facility that because only my head is being done that it is OK to wear jeans and tennis shoes that aren’t overly embellished.  I personally always choose to wear yoga pants and t shirts with tennis shoes usually.  All facilities will let you change and provide you with some kind of garment, likely surgical scrubs, if you don’t or can’t wear MRI compatible clothing.  I feel safer and more comfortable in my own clothing though.

Before you have an MRI you will likely need an IV started.  This is so the technician can put in dye later to get studies with contrast.  If you are allergic to iodine you should mention that beforehand.  At my facility you get ushered back from a main waiting area to the MRI specific one.  Once you get there the nurse sees each person in turn a sticks them.  At this point I get an MRI every 6 months and have for about 2 years so I’ve made friends with some of the employees.  Once your IV is in and they have tested your kidney function you are ready to wait for a go in the tube.  Your kidney function has to be tested because the most common contrast medium can be harmful if the patient has compromised kidneys.

Now it’s time for the tube.  This is where the details get as fuzzy as my vision.  I am helped onto the platform, given ear plugs, and my head is put into a holder after my sleep mask is on.  The ear plugs are a must.  Anywhere I’ve had an MRI has provided them, and trust me you want to take them.  It gets a little loud.  For a brain MRI you don’t need to go all the way into the machine, for me I find my knees and lower are outside of the tube.  I’ve also always been given a panic button to hold in case I got claustrophobic during the scan.  I have no idea what would happen if I hit the button, I assume it would prompt the tech running the exam to talk to me and see what was up.  I’ve never needed to push it.

Where I get my scans done the tech talks to you at different intervals.  It just happens through the speakers in the machine.  They tell me how many more scans need to be done and when I’ll be taken out of the machine for contrast.  As the patient it’s your job to stay very still.  Even when they pull you out of the machine to add contrast to your IV it is important to try your best to keep your head and neck still in the holder.

The last time I sat in the waiting area for my MRI I was chatting with the medical secretary and very friendly with the nurse.  A woman next to me asked why I seemed so friendly with everyone.  As an aside, it always amazes me what people think is OK to just ask.  I told her that’s what happens when you come to the same place every 6 months for followup cancer scans.  She didn’t ask anything after that.

I can only speak with such detail about my own experiences.  That means if you are having  scan at my preferred imaging center I can tell you every second of what will happen, but I can’t speak to the specifics of any other place.  This is just a post about how your MRI might go and how you can do things proactively to make your own experience a little better.

Brain fog.  I don’t mean like the stuff they talk about in commercials for energy drinks.  I’m talking about the real deal.  The fog that takes sacrifice to earn.  Brain fog was a huge side effect for me, so I’m writing about it.

Honestly, I didn’t feel like I came out of the thickest fog until about 8 months after I ended chemo.  I could totally function with it.  I mean that I could go about my activities of daily living and treatments.  I know for darn sure that there’s no way I could have participated in surgery though.   I knew the instruments and the setups.  In fact, I used to draw the mayo and backtable setups for cases just to make sure I still could.  While that was never an issue, coping with changing conditions in a surgery would not have been possible for me.

Since I obviously couldn’t gauge how my brain was firing with my old job, I had to find another barometer.  I ended up using a game on my phone.  I know that sounds stupid.  So you used Angry Birds to figure out how foggy your brain was?  No, I used a word game.  I had played the game for a year or more before I got sick and had a high score set on it from “before.”  The game gives you 6 letters and you have to come up with a list of words from those.  At least 1 has to be a 6 letter word in order to move on in the game.

Just a few days after my surgery I started playing it again.  I play it almost every day.  I will be totally honest, it took a long time before my mind could work fast enough to break my previous record.  For a long, long time I just wasn’t able to focus in and meet the time requirements.  I really felt like that dumb game was the best measure of how my brain was doing.  Since it’s just some lines of code it can’t embellish how well I was doing.  The people around me love me and wanted me to be doing better.  I wanted to be doing better.  So, we all looked at every little thing as a sign of improvement.

The word game was a neutral plane.  It was also really reassuring to see myself improve as I progressed with treatments.  After radiation was over I noticed that I started doing better.  After chemo ended, I really noticed an upswing.  Now, I don’t worry about it as much.  I still deal with a little fog in my head, but it’s nothing at all compared to what I felt.  It’s important to find some way to measure how you’re doing.  Some people have much more obvious ways to tell like having to relearn basic skills.  I was lucky to just need a silly game to watch how I was doing.  I recently broke 1 million points on the game and I totally woke my husband up to tell him.  What can I say, that game is pretty important to me.

Find the barometer that works for you.  Whether it’s going back to work, a game, or a hobby.  Have a way that makes it easy to see progress so that you can celebrate it.  It’s a hard thing for anyone who isn’t going through it to understand.  Brain fog is a reality for most tumor patients.  So, we have to find ways to deal with it and work through it.

Most days I am happy.  Most days I can look at the wonderful life I have and the amazing people in it, and be so thrilled.  But some nights, out of nowhere, the desperate thoughts creep in.  They are worth writing down because they are real and they are just as valid as the happy ones.  There are things I want in life.  They aren’t the same things I would’ve said I wanted 2 years ago.  I took these things for granted then.

I desperately want to grow old with my husband.  He is a spectacular man and I adore him.  I want to be the woman who gets to get old with him.  I want to spend a long life together.  I knew before that tomorrow was never promised.  Everyone knows that, and many people say it.  The thing is, I don’t think 99% of people really understand that.  The thing with living is that no one gets out alive.  We all meet the same basic fate.  It never really occurred to me that that would be coming sooner rather than later.  Most of the time I can be thankful for the time I’ve had with Jeremiah, but some days I think about the fact that those days are numbered.

I desperately want to outlive my parents.  That has been a goal of mine since I was sixteen.  I want to see them get old and retire and finally get to do whatever they want.  In my brain I know that there’s nothing I can realistically do about this.  I “know” it’s not my responsibility.  Most of the time I can push that to the back of my mind and not worry about it.  But, there are some nights when I can’t anymore.

I am a Christian and I believe that Heaven awaits me after this life.  That doesn’t make it easy to think about leaving this life.  I’m not near death at this point at all.  The statistics say that I might get 10 years or more.  I realize that when it comes to brain tumors, I am so lucky.  I’m about as lucky as an adult with a brain tumor can be.  That doesn’t stop the desperate thoughts.  It doesn’t make them invalid.  When disease happens to you you start to see life through a different lens.  I believe that a combination of love, faith, and medical intervention gives me the best chance possible.

It’s not wrong to have “bad” feelings.  I would even say that it’s normal.   Of course this disease changes you.  It changes everything.  I think it needs to be said that negative feelings are ok to have.  There are lots of places to read about constant positivity.  I want to write everything that I think.  Not just for myself, but for anyone who might stumble across this corner of the internet and be looking to feel valid in their feelings about their cancer.

Tomorrow I will wake up and I will feel better.  I will start my day and go forward with life and living.  I will not be thinking about these things then.  But, it’s ok that I’m feeling this tonight.

In March of 2014 we finally decided to adopt a dog. We found a little weirdo named Rufus and we knew he had to be part of our family. At the time I thought we were just getting a dog, I didn’t know how much that little dog would do for me. Rufus is a really little guy at only 7 pounds. We think he’s a chihuahua and weenie dog mix. We were told he was about 2, but according to the vet he’s closer to 8 at the time we adopted him. Our accidental old man.

Life with Rufus was not that much different until September of 2014 when I found out I had a brain tumor. All of a sudden I was spending most of my time at home, and I was with Rufus. No one has spent more of my bad days with me than my little Rufus. He went to a friend’s house when I was in the hospital since my husband was with me pretty much all the time, but other than that time he’s been my little buddy.

It was really helpful to me psychologically to not be completely alone all day. I realize that he’s not a person (though he would protest that), but having another living creature that wanted to cuddle or play was invaluable. He’s still stuck to me like glue a lot of the time and he hates when I go places and leave him. That happens more and more as I start to feel better and can do more things.

I know this is a silly thing to write about, but I know that my cancer journey would have been drastically different if I hadn’t had Rufus with me each day. I would have been totally by myself so much of the time, and I don’t think that would have been good for me. I don’t think that you should go out and get a pet when you find out you have cancer, but I think they can be so helpful if you have one. There’s a reason therapy animals exist, and I totally get it.

Rufus doesn’t notice that I’m extra tired still. He’s just thrilled to have a person to nap with. We jokingly call him my nap coach. He didn’t mind if my brain was foggy. He was totally fine with me so long as I could pet him and give treats. He’s one of the best things in my life, and I know I’m obsessed. But, after all he’s done for us it would be hard for my husband and I not to adore him.

If you are reading this and you’ve been diagnosed with a brain tumor, I am sorry. It’s not an easy road. The thing you will find is that most people have no idea about brain tumors and how they work. It’s a weird kind of cancer to get because you won’t see people doing 5K races for it. You can’t go to the store and buy an item with a gray ribbon on it. The chemo you’ll most likely be on will totally baffle people.

Why would anyone know about brain tumors unless they had to? I will admit that all I knew about brain cancer before I got it was how to remove or debulk a tumor. I had no clue what actually happened after the patient rolled out of the operating room. But, then I needed to know all of a sudden.

You will find that most folks have no concept that even after treatment and surgery your tumor will probably come back. In some ways I’m glad that not so many people have to know about brain tumors, but in other ways it’s frustrating. I think one of the most maddening facts is that if I had gotten a brain tumor 20 years ago, my treatment would have been very similar to what I did in 2014. Not that many people are working on brain cancer because there aren’t enough of us for it to pay off. According to the American Brain Tumor Association about 78,000 people will be diagnosed with a brain tumor this year. Of those cases, about 25,000 will be primary malignant tumors like I had. My momma always said I was special.

Brain tumors are an abstract idea to most people. Unless you have serious side effects from surgery or treatment it’s a little harder to spot what’s going on. There are expectations of what cancer is supposed to look like and it may not look like that for a brain tumor patient. It was almost easier when I had shaved my head and was having radiation because I was a beanie person and I looked like a patient. When my hair eventually grew out enough that I started wearing it without a beanie it became harder to see that I was still sick and still going through treatment.

That’s part of why I am writing this blog. It’s not especially easy for me to write about these things but I want to be a starting point that patient’s can direct their friends, loved ones, and communities to. There are several places online to find information about the clinical side of having a brain tumor. There are message boards out there too, but there aren’t very many strictly patient written narratives of what happens when your whole world changes.

As a patient I am angry that there isn’t more money being poured into research. I know that there are some people out there doing their level best to break the code on brain tumors. I follow one guy on Instagram and every time he posts about his research I root for him. I don’t focus on the anger much at all, its not productive. When I feel upset or frustrated that I’m not better, I write rambling posts like this one. I want to live, every single one of us brain tumor people want desperately to return to life before. It can’t be done. The lucky ones like me get the opportunity for functional survival. There is no going back to what was before. We are all forever changed by the brain tumor beast.

I don’t expect all the people I know to go out and become experts on brain tumors, that would be crazy. I do hope that they will be understanding when I don’t use words like cured or cancer-free. I choose not to say those words intentionally. As a patient it’s important to put things in perspective. You have to have reasonable expectations for yourself. So does everyone else. Bran tumors are a mystery to most of the population and that’s OK. You have to advocate for yourself what you can and cannot do and how you want to frame the vocabulary of your story.

I use humor to deflect fear. Humor is my natural reaction to most things as is optimism. I wanted to take a break from the doom and gloom and write a post that is focused on some of the funny aspects of having a brain tumor. There’s always humor if you look hard enough.

1. The other day my husband surprised me with a gift. It was a cute purse from my favorite brand, Radley London. I was shocked and excited to get it. I told him it was super cute and perfect. He then told me that I had apparently shown it to him on the website a couple months ago. I have no memory of doing that. Brain Tumor Bright Side: You get surprises way more often because you can’t remember things.

2. I call the hole where my tumor was my brain pond. Since there was a little something on my last MRI that my doctor told me not to worry about, I have come up with a theory. My friends Megan and Courtney helped me come up with this. Brain Tumor Bright Side: I might be growing my own private island on the brain pond! (I’m actually really freaked out about this, but this was the only funny thing I could come up with.)

3. You can say pretty much anything you want. It works great if someone annoying needs to be brought down a notch or two. You can say something a little bit out there and then everyone just assumes it’s because of your brain tumor or surgery. This is by far my favorite thing. Brain Tumor Bright Side: You can say whatever you’re thinking!

That’s all I could come up with at the moment, and I don’t mean to make light of the seriousness of having cancer. I do however, want to highlight the bit of fun you can have while you are fighting for your life.

I’ll be honest, I knew pretty much everything about my surgery and basically nothing about everything else that would happen. So, when body temperature became a huge issue in my life, I was taken off guard.

Picture it: San Antonio, summer 2010. Sea World. We were visiting friends in Texas and we all went to Sea World one day. We were sitting at the sea lion show and I felt like I really needed a drink of water. I asked my husband to go get some which he did. As soon as he got back, I passed out. I am told it was pretty terrifying for everyone else. My eyes rolled back and I blacked out briefly. I recovered and drank insane amounts of water the rest of the day. Looking back, I totally should have gone to a hospital because I had had a real heat stroke. Whoops. The not so neat thing is that once you have a heat stroke you’re much more prone to having another. At least that’s what my doctor told me. So, since back then I tried to avoid putting myself in that situation again.

But then came steroids. Oh, steroids you jerks. I have no idea if it was the steroids, the surgery, the radiation, or chemo that left me with no control of my body temperature. I think it might be a combination of factors because I haven’t had any of that in a year and I still have the trouble. Hot flashes. Man, my older friends were not kidding when they complained about them. I never thought they were being hyperbolic, but now I know how crappy it is. Ugh.

I live in Oklahoma, which means we get 4 actual seasons every year. Unfortunately one of the longer ones is Summer. Where the humidity is high and the heat is oppressive. I basically avoid the outdoors from May until like September. But it’s not just avoiding heat that’s a problem. I will just burst into a terrible sweat pretty much whenever. A month ago I was helping at Vacation Bible School. I was hanging out with 4 year olds and I was not chasing them or anything weird. But, it was like 75 degrees in the room and so while making crafts and coloring I was drenched in sweat. It’s so not pleasant. I always feel like I need to explain to people that I have no control over it, because it makes me super self conscious.

You’re probably thinking that 75 degrees isn’t hot. Yeah, it’s not. So how cold is your house? Very. My parents often bring jackets with them when they come over because they’re not used to the frozen taiga that is my home. We actually only keep it at about 64 at night and 68 during the day, those are perfect so long as I don’t try anything very taxing. I’ve become accustomed to being covered in sweat. It’s not a cute look for me, but it’s what I got.

I thought it would go away eventually, but it hasn’t changed much at all. It’s not just summer either. It seems to be more tied to physical activity than anything else. I’ve seen my doctor about it, but there’s not like a treatment for this. If I only sweated from my underarms there are options to curb that, but I can pretty much sweat from anywhere. I’m an equal opportunity perspirer. I haven’t seen anyone else in the brain tumor community specifically talk about this problem, so I’m putting it out there in case some other person is dealing with it. I don’t know if it’s just a result of a confluence of factors that created the perfect sweat storm for me, or if it’s something other people just don’t mention.

I do know that it’s very important to keep hydrated if you’re anticipating a hot flash. You will rarely see me without a bottle of water for that reason. If I’m not holding the water, it’s most likely in the car not far away. In fact, I keep a couple bottles in there just in case. If you come to my house you will definitely see me with 2 giant Tervis Tumblers of liquids. It’s usually iced lemon water in one, and unsweet decaf tea in the other. I try to get at least 100 oz of fluids a day and I rarely drink anything that isn’t tea or water. That’s just a good life tip really, drink water.

Are you over me lamenting the hot flashes? I am. I wish they would go away but I don’t really foresee that as a possibility. I really am just writing this to put it out there that I am a brain tumor patient who has hot flashes. It’s like a little gift from my tumor to remind me of it. A little gift which I don’t want.

I will most likely write a few posts on this topic. It’s the hardest one I’ve had to deal with by a long shot. When I think back to the person I was before this happened, I barely recognize her. I don’t think I’m a better person now, but I am certainly a drastically different one.

Everyone’s life is divided by watershed moments. Maybe those moments are marriage, divorce, children. For me my life has become a play in 3 acts. My life is delineated into my youth until age 16 when my brother died. That was the moment that has in some way defined everything. Things either happened before or after Tyler. This not to say I dwelt on that loss all the time, but there is a clear distinction in my memory of things that happened with him and without him. Bad things happened before and after, but far more good things also happened. It never occurred to me that my life would ever be split up like that again.

When cancer became a part of my life my life split again. Now there is a time between my brother and my disease and then there is everything after. In that intervening period I had become a surgical tech and worked very hard. I was, frankly, very good at what I did. I let my job define a lot of who I thought I was. Being “good” at it was important to me. I was confident in my abilities to handle neurosurgery cases. I always reminded myself of the the secret to surviving in the operation room though. You have to know that even if you’re skilled, you are replaceable. Much better scrubs came before me, and will come after me. That doesn’t mean I can’t be as good as I absolutely can be.

I look back at that girl and I see someone who was strong both mentally and physically. I could lift heavy things and people if I needed to. I could get through a 10 or 12 hour shift and then go to the grocery store. I was not always nice, but I knew my specialty and could handle it. I could totally hang in an 8 hour back case and move 12 pans of instruments around constantly. She was strong and I miss that strength.

I haven’t gone back into the operating room and I don’t think I will. I know I won’t go back into a neurosurgical OR unless I’m the patient. I just can’t do it. I know I can’t do that physical labor for a full shift anymore. I know I can’t lift a dozen heavy pans over and over. I used to get very frustrated with myself for not being what I was. I won’t lie, I still get upset about that sometimes. But, I’ve had to embrace what I am now. I am not nearly as strong, but I am working on it. I have no desire or ability to be a body builder or anything, but I can see small changes that signal I am getting somewhere.

I gained quite a bit of weight during treatment and I’ve lost some of it. I don’t think I’ll ever be the size I was when I got married or anything, but I have come to the realization that I don’t care. I’m alive and that’s way more important than what size jeans I wear. I’m sure people think I just need to get to the gym and workout. That’s really not feasible for me. This is a touchy subject because it’s impossible for anyone else to understand. I get exhausted so easily still. I think it had way more to do with the after affects of chemo than anything else. I take a nap almost every morning. I sleep through the night 95% of the time. It’s not a sleep issue, it’s an exhaustion one. It’s not super common this far after treatment to still feel this way, but some people do. It’s something I’ve spent a lot of time angry about.

The tiredness is however, not something I can change. I have tried, and I have seen some improvement but I’m not who I was. I struggle with that. I mostly struggle because I worry what other people think about where I am. I go back and forth about caring and not caring, but everyone cares a little about how they’re perceived. The last time I went on vacation I discovered that the plans I had weren’t going to work. I couldn’t do them.

My husband and I love to visit the Smokies. The first time we went I was “normal” and we went to a theme park and all around the national park. We even did a 7 mile guided hike like it was not a big deal. This last time, in September 2015, was so different. I could walk around a little, but not far. The elevation especially got to me, not something that had ever happened before. So, what did we do? We came up with a new plan. We did what is apparently referred to as car hiking. Instead of walking some of the trails in the park, we drove several less-used park roads. Almost every day we were out driving down some dirt or gravel path, taking in the sights, and getting out when we wanted to for short excursions. It actually turned out to be really fun and we both liked it.

I felt so much guilt at first because it was me limiting what we could do. My husband never made me feel bad about it, but I’m pretty capable of creating anxiety all on my own. I deal with that anxiety still. But, when I get really in a spiral I remind myself that being alive is much more important than how I might look. I remind myself that the only 3 opinions I really care about are my husband’s and my parents’. I remind myself that those people do not care about what limiting factors I have, only that I’m around to make new memories with. It took me a long time to realize that I might never get back to who I was before my brain tumor. It took me even longer to be OK with that. I have gained empathy for other people that I see. I don’t judge as much as I once did, because I know what it’s like to worry that other people are judging you. I know how it feels to have to use a powered wheelchair on vacation and get looks from people when you can walk a little way without it. I know I hated having to use one, but I needed it at the time.

Now, I look back at how badly I wanted to be back to normal and I see how dumb that was. I really wanted to feel comfortable and confident again. There was no way I was going to be the same person as I was before cancer. That’s not possible. I had to adjust my thinking to accepting what and who I am now, and not mourning for who I was. Please don’t think that I have this all figured out, because I still worry about this to a degree. I don’t worry about being exactly who I was before though. I know that girl is gone forever. I am happy with who I am right now. I am grateful to still have the same people who love me no matter who I become.

The thing with having a brain tumor is that everything you do treatment-wise is focused on your brain. Obviously. But, it’s actually very important to focus on your mind. But wait, you say, aren’t we already focused plenty on that? Isn’t the focus of a scalpel, radiation beams, and chemo enough? Nope.

I had surgery in September 2014 and finished radiation in December of that year. I started chemo again in January 2015. What I should have started in October or November was therapy. I didn’t go until late February 2015. Your mental health is nearly as important as the physical health of your brain. No one told me to go to a therapist. In fact I hadn’t seen one since 2004. But, I needed a therapist. I have had anxiety and depression problems for years. I started taking Zoloft at 16 and had been off those medications for a few years in my mid 20s. I had gotten back on an anti-depressant about a year before I got sick. I don’t personally feel any stigma about needing help from people or medication. To me, being on Paxil is no different than being on any other prescription.

It took me a few months to really realize that I needed to see someone. My oncologist had me on anti-anxiety meds and honestly, I needed them at the time. Cancer is freaking terrifying. I was scared and I was also feeling extremely guilty. I haven’t talked much about that aspect but I think it’s important to put it out there because I know that another patient may feel the same way and I want them to know it’s OK. My brother died in 2002 at 12 years old from complications of a bone marrow transplant. I felt, and frankly still feel, a huge responsibility to be OK for my parents. They’ve had to bury one child, and I desperately do not want them to do it again. At first I felt so much guilt over getting cancer and having to tell them something was wrong. They assure me all the time that it’s alright and not my fault. I know that logically, but I struggled with anxiety about it.

I had anxiety about being a burden. I wasn’t working, I wasn’t able to do some things for myself. I didn’t feel confident driving until late December, so I always needed someone. I hated it, but it was the unavoidable reality. When it finally hit me that I could in fact see a therapist for help I was thrilled. I didn’t know who to go to. I called the psychiatric hospital that is affiliated with my preferred local hospital and asked for a referral to an outpatient therapist. After getting some basic information about what was going on, I was placed with a Licensed Clinical Social Worker.

Something really miraculous happened. Of the dozens of counselors I could have been assigned to I was assigned to a woman whose mother had had a brain tumor. She had an understanding of the feelings I was going through as a previously independent and strong person who was now thrown way off by her brain turning on her. She gave me lots of tools to help work through my anxiety and be able to live with it. It helped me cope right that moment with things that were happening. She also helped me feel better about what my new normal was shaping up to be in the future.

I am still on Paxil. I was taking it before cancer and I don’t think I’ve outgrown the need for it. The reason people take these drugs is because of a chemical imbalance in their brain. You cannot will yourself to correct that without medication. A chemical problem requires a chemical solution. I feel no shame about that. I did stop my anxiety medication, Xanax, in late July of 2015. My oncologist had put me on it and not really told me anything about it. I should have asked more questions but I was pretty overwhelmed at the time. My primary care doctor would later explain to me that I was on a reasonably high dose and that I would need to taper off. Those were a real fun couple of weeks. I am sure my husband thought I had lost my mind.

I would not have been able to get through those weeks or the coming months without the tools my therapist taught me. I know what to do to talk myself off the cliffs of panic now. Therapy alone doesn’t solve the problem for everyone but I think it’s an essential part of cancer. It’s just as necessary as any other treatment. At the end of treatment, when the world moves on from your disease and you are left picking up the pieces of who you are now, you need mental health help. Everyone does. We all read the blogs and stories about people who appear to weather every storm by a combination of optimism and smiles. Maybe that happens, I don’t know. I can’t speak for everyone, but I can speak for myself. Faith and family and optimism was not enough to get me through this. I needed professional help and I went and got it.

It’s critical to remember that it’s not just the patient who might need mental health help. Being a caregiver is extremely hard. I really can’t imagine how exactly my loved ones felt. I know that my husband and my parents would get the help if they felt like they needed it. Not everyone feels that way though. So, I think it’s important for me to explicitly state what I did to help myself. I haven’t been to see my therapist in about 6 months because we both felt I was in a good place. I can go back at any time. It’s not a silver bullet for every negative feeling. I still get anxious and have panic attacks. I still sometimes go a little down the spiral of despair. I worry about things that I logically know are not reality. What’s important is knowing that if I had not gotten mental health help I would not be able to deal with life. I encourage any person going through cancer to get mental health help for themselves and for their caregivers. There is nothing easy about this journey.

This is gonna be a longer post. I’d get a snack and settle in. I had to have help recalling the timeline of everything because I was in such a fog at this time.

Steroids are a double edged sword. They made my headaches much better before I had surgery, but the side effects were much more than I ever bargained for. At the time, I was desperately searching for ways to make it better and all I could find were people on message boards with the same issues and some of these poor people were on much higher doses than me and and couldn’t get off. When my mass was first discovered, my primary care doctor prescribed me Decadron for a week to help with swelling. This round was no big deal, it was a really tiny dose and it was only for a week. I ate a little more than usual and stopped them with no issues.

Unfortunately, my headaches came back and I couldn’t stand the pain. Pain medications had no effect on them, so steroids were the only answer. I started taking them again. Oh my gosh, this time was nuts. I ballooned up not just from gaining weight, but from retaining water. I was so uncomfortable. You know that characteristic steroid moon face? I was rocking it hard. I was nearly unrecognizable. I looked very much like if you stuck my face with a pin it would surely spray water everywhere like and overfilled balloon. Every part of me was swollen. I had trouble walking and getting around because of how puffed up my joints had gotten. We lived in an apartment at the time that was up some stairs. I really could not leave our home unless it was absolutely necessary. I hated it. I got over ambulation problems but when it came time to buy our house this year, a one story was a must have because of our memories of steroids.

At some point before surgery it was decided that I would try to taper off steroids. That was not so bad at first, but I’ll tell you it was hard to cut those tiny pills into 1/8 pieces. I had more discomfort from getting off the darn things. I remember my joints, specifically my ankles, being so incredibly painful. I don’t have a super human pain tolerance or anything, but I rarely take anything stronger than Aleve. I was willingly trying actual narcotic pain meds to stop the ankle pain. Of course, there was no such luck. I tried OTC anti inflammatory meds, real pain meds, heating pads. I finally tried ice. That worked for me. I have a distinct memory of sitting in the living room with a heating pad on my stomach for cramps, and 2 bags of ice on my ankles. It was so strange. Of course, during the day when the ice packs cooled down I’d have to hobble to the kitchen to change them out which was probably pretty funny. I feel like our dog got a few laughs anyway.

About a week before my surgery was scheduled I had been off steroids totally for a couple of days and my headache became constant and unbearable. I decided it was time to head to the ER. Nothing was going to make it better but more steroids. It didn’t matter anymore than they made me feel terrible. So, the nice ER doctor called my surgeon who was operating that morning and got orders for steroids and an CT to make sure nothing had drastically changed with my tumor. The tumor was just chilling in my head, causing pressure. Within an hour of that dose I felt so much better. I just needed to hang on until after surgery. I remember the ER was actually really quick in dealing with me and I was walking out the doors when my sweet surgeon chased me down between cases in the OR. He just wanted to make sure I was OK. I told you all he was awesome.

During this week or so there was an exhibit of one of my favorite artists at a local museum. We probably should have applied for a temporary handicap permit but we never did. My eternally awesome husband usually just dropped me at the doors of where ever we went unless it wasn’t very far. Well, there wasn’t a good place for that at this museum so we parked and he had to push me in a wheelchair. I hated it so much. But, there was nothing I could do about it. I do remember him parking me at the entrance and going to buy admission and when he said 2 please, the woman at the desk pretty rudely said she didn’t see the other person. I was like, “Yo! I’m down here!” The times I needed the wheelchair did give me huge amounts of empathy for people who have to navigate life that way all the time.

Surgery day came and I stayed on steroids for a little while after. We weaned off them carefully again with the same results as before. I had ankle and wrist pain. You do not realize how much you move those joints until it is intensely painful to do so. You know what real love looks like? I do, it looks like my husband who during this time had to do so many unpleasant things for me because I couldn’t do them myself. I could not bathe myself for a few days. I had to have help in the bathroom. He took off work the week after my operation and it turned out to be necessary. He, as always, stepped up to the plate and did anything he could. I hated needing help but he never made me feel like it was the massive imposition I thought it might be. Prince Charming, that guy. But, I wanted to badly to get out of that slump and feel somewhat better. I headed again to Dr. Google to see if there was anything to be done. I did find some suggestions on various forums. For the most part, you just have to suck it up and deal but magnesium kept coming up. I can only tell you what worked for me, I’m not a doctor and I’m not saying it’s going to fix anything. Apparently steroids strip your body of magnesium. At the time I was taking an acid reflux medication called Dexilant and it also had some effect on magnesium. I kept searching all my meds and lo and behold my anti depressant of choice, Paxil, also stripped the body of magnesium! I was hitting a hat trick of medicines that chewed through magnesium! It should be noted that I discovered this at like 3 in the morning and I woke my husband up at like 5 to tell him about it and make him to go buy some. He is pretty perfect and incredibly long-suffering. I had also researched some brands of supplements and foods that were high in magnesium. I knew exactly what I needed to test the theory. Not long after I was taking my first giant black magnesium pill and eating a lot of guacamole. Avocados are a magnesium rich food. Also bananas.

I will be damned if it didn’t help more than anything else we had tried. It by no means made all the discomfort of tapering off steroids go away, but it lessened it a perceptible amount. The other problem with the steroids was the swelling of my entire person. It was awful. I looked very much like the Michelin Man. It’s not a cute look. Once I was off steroids my body started to go back to something resembling normal for me. One thing that helped quicken that process was using a massage chair. We went to Bed Bath and Beyond and bought one of those things you stick in a regular chair that massages your whole back and neck. I also got this really fancy foot and calf massager. We set those up in a comfy but sturdy chair in the living room and it became my favorite place. I think both things combined cost us about $250 in 2 transactions using the 20% off coupons. It seemed like a huge extravagance to me at the time, but it was so worth it. I would spend at least an hour a day in my chair and it really helped my body de-puff. I did some light massaging on my face to help it go down as well. If you look up some things about lymphatic massage there are many different places to find instructions on where and how to do it. Most professional masseuses also are trained in it and can help if you go for a session. The biggest thing is that it’s much lighter pressure than a standard massage.

It’s really hard to put into words how awful steroids were for me. I have a friend who at the time I was going through this worked in a drug rehab facility. I recall telling her I didn’t know how people who were on hard drugs dealt with withdrawls. I was on a prescribed medication and I wanted to die. When I was researching about steroid withdrawal I found that some people who were on really high dosed couldn’t get off of them at all. I can’t imagine that. I know that steroids are just a part of the brain cancer universe. I’ll need them again and I will take them to maintain a good quality of life. Of all the things that I went through this was the most physically painful. It was psychologically hard to take chemo and it was emotionally difficult to face my own mortality, but steroids just plain hurt and there isn’t much you can do about it but get through it. You need to be determined, but a good partner and friends can really help in getting through the worst of it.

Since I wrote about what happened with some of my friends in my last post I thought I would hit on some ideas of what you can do to help if someone you care about is sick. I feel like this advice is pretty universal no matter what illness your person is dealing with.

The first thing you need to figure out is what you want to do. You need to take a moment and really think about how much involvement you are really willing to maintain. If you don’t see yourself hanging in for the long haul, it’s better to bail than to promise things and then break those promises. You also need to consider how much you realistically can do. Life continues while illness happens and some people can do things others can’t. A great thing to offer to do is to help take the person to radiation or chemo appointments. An even better thing is to coordinate with other people willing to do that and not make the sick person worry about it. That is actually a massive commitment and it’s OK if you can’t do things like that. Not very many people have time during the workday to do those things and the ability to commit to them over a month or more. It’s one idea, and probably the biggest thing you can do, but it’s not feasible for most people.

One thing my mom did for us when I was at my sickest was come over and clean. She did a few times, nothing crazy. It helped us because I physically could not do it and my husband was working. It felt so much better to be in a clean home and I think it made her feel like she was doing something tangible to help us. It is something I am forever grateful for. The cool thing about cleaning is that it only costs your time. Most people have cleaning supplies already so it’s not a financial commitment. I will say this, cleaning is something I would suggest from a very close friend or family member. I don’t know that I would have let anyone other than my mom do that for me. There are some charity services that offer house cleaning during cancer treatment, but they are pretty limited in the number of people they can serve.

When I think of taking meals to people during hard times I always think of growing up in church. My mom was always taking meals to someone who had just had a baby, a surgery, a death in the family. Maybe it’s a southern thing? I think it’s for sure a church lady thing. My aunt brought us several meals after I cam home from the hospital that I was so happy to have. It also helped that I have grown up eating her cooking so everything she brought was comfort food for me. If you have the ability to do so, bringing a meal is a great idea in the first week or 2 after surgery or major treatment. I would ask if there’s anything the patient was not liking because the medications can really change your tastes. The meal doesn’t even have to be some homemade feast, it can be from a restaurant. Going to get the food makes it easier.

The last piece of advice I would offer is to stay in touch. You don’t need to call everyday and have long conversations about life and the world and whatever is happening on Real Housewives. It’s as simple as texting as often as feels normal or sending a card. The key thing to remember is that the burden of communication isn’t on the sick person. They are all cancer all the time and it’s not realistic to expect them to keep everything together. If you don’t get a reply, don’t worry about it. Try again in a week or something. I know that I dealt with hurt and feeling abandoned by a few people, but I don’t feel guilty about it. Some people are more public than others. It didn’t feel natural for me to broadcast every single cancer thing I did on Facebook. I have put some updates on there when I felt like more people might want to know but creating a page for my Fight With Brain Cancer would have been disingenuous for me.

What if being a party to someone else’s battle is too hard? Well, I think if that’s the case and it’s going to negatively effect you as a friend you should say that and take some steps back. The flip side of that is while we get to choose our friends we don’t get choose what all of them go through. We get to choose how we react and how we handle helping them. The ideas I gave in this post are, for the most part, super obvious. But, it still is a good idea to write them. My entire goal with this blog is to help someone else who is sick. To have a place with a different opinion that already exists. This post is meant to help anyone who cares about someone who has cancer and wonders, “What can I do?” You may not be able to make the illness go away, but you can bring more love into the life of someone who is struggling in the darkness of disease.

This post is one I have gone back and forth about writing ever since I first had the idea of a blog. I decided to write it not only to thank the wonderful humans who populate my life, but also to help other patients understand what can happen when you get cancer. I will start this one off negative and end on the much more positive notes. These are my experiences and my interpretations of what happened only.

Friends are wonderful things to have and a fantastic thing to be. I try to be a good friend and I think that my close friends would tell you that I am. I have friends from childhood and friends who I made as an adult. I think that I read somewhere that a “friend” will only stick with you about 2 weeks during a crisis. I think that’s kind of true. I also think that once you are in the middle of cancer you are out of sight, out of mind for some people. What I really want to stress is that as the cancer person it’s not your fault if friendships falter. You are forced to be all cancer, all the time. It is really up to your friends to keep up the lines of communication and friendship. I have friends who knocked it out of the park, and I have friends who completely dropped the ball.

It is so easy in my book to do the right thing. I appreciated people immensely who would just casually text every few months. I adored the people who sincerely were praying for me. I don’t want to focus on the hurt that happened, but I think it’s important to note it for other people who might have a friend who is going through cancer. You don’t need to show up every 3 days with a casserole or call every night. You just need to keep the communication open and give the sick person a chance to reach out when they can and not feel like an imposition. I felt like I was so much trouble when I was in the throes of cancer and I didn’t want to inconvenience one more person. I have learned some important lessons about people and about myself. I know that if one of the people I care about goes through a crisis I will do better than what was done to me in some cases.

Cancer is isolating, especially brain cancer. It attacks the very essence of who you are and I wanted validation so badly that whatever I was after surgery and treatment was good enough. Fortunately, while some people were dropping the ball some others were picking it up. I grew up in a small town and most people I count as friends I have had since I was very young. I have a core group of really close childhood friends that are absolutely my rock. The more I think about it the more I realize that it’s partially because these people were there for me in my first defining life crisis, the death of my brother. I was there for them through long divorces, deaths, illness, and family troubles. We had already worked out how to react when we were younger and just fell back into place.

My cancer diagnosis coincided with our 10 year high school reunion. I got added to a group chat with 4 of my best friends and told them what was going on. In the intervening years since high school we had all taken different paths and weren’t nearly as close as we had been. That’s really normal. But, when I was too self conscious about how I was looking thanks to steroids these people stepped up. Instead of having to go to a big party and feel awful they all took time out of their schedules to have a separate get together. I got to see my very close friends without having to explain anything to anyone else. They made me feel normal which was such a needed gift at that time. I don’t see these people every day or anything but we do talk to one another every day in our group chat. I know that sounds silly, but I don’t know what I would’ve done without that these last 2 years.

That’s why I decided to write this post. It’s not to chastise people who let me down, but to thank my friends who helped me so much. That group chat helped me feel normal and connected to other people. I love hearing about their kids and talking about random things with them. It might sound stupid that a Facebook group chat means so much to me, but I don’t care. When other people bowed out these people stepped up. I think they know I would do anything I could for them. I hope they do. There’s nothing that could ever really express the gratitude I feel for their friendship.

If you have a friend who is going through a tough battle, not just cancer, I would encourage you to try to maintain some type of contact. It really doesn’t take much sometimes. A text or a private message can be enough. If the person doesn’t always reply try to be understanding. Cancer is a really hard thing and the patient doesn’t always have the ability to handle everything. Staying in contact helps maintain normalcy. It helps validate that the person is still human and not just a disease. It made me feel like I wasn’t too difficult to love. Brain cancer is one thing that defines me, but it isn’t the only thing. Without my friends I would have a much harder time believing that.

Since my journey began I’ve been under the care of, I believe 6, different doctors. They were all very capable but they were all different. I’m going to talk about my really great and really awful experiences. Honestly, I had been surrounded by such fantastic physicians that I was totally taken off guard when I encountered one that wasn’t. I’ve talked at length before about how wonderful my neurosurgeon is. Dr. B and his PA are completely great people and they are incredibly skilled. I didn’t hesitate to choose him as my surgeon and I would do it again.

My neurologist is a very old school doctor. Dr. D wasn’t much in the bedside manner department, but he was endlessly intelligent and thorough. The man really fought to get the tests I needed as quickly as possible when I was getting diagnosed. I thought at first he was kind of a jerk, but by the time we were done I felt very fondly toward him and his nurse. I would recommend him to anyone, with the warning about how he can come off at first. I have encountered and adored many doctors like him over the years, so he was pretty easily endeared to me.

The two radiation oncologists I had were just wonderful. I need to look up new words to say how wonderful these guys are. I saw both doctors throughout my treatment and it was pretty much the same no matter who I saw. Both doctors and their staff really cared about the patients. They knew that radiation is not a fun time and earnestly wanted to make it as easy as possible for each of us. On doctor day when they saw every single patient currently undergoing therapy, which is easily a couple hundred, you could tell they were busy. You never felt rushed though. It didn’t matter one bit which doctor you got, they both would sit and listen and offer suggestions. They also had a nutritionist and a social worker there who would help patients coordinate travel and keep their weight up. I never used those services, but the doctors encouraged anyone who needed anything to just ask.

I could write a whole novel about my primary care doctor. As far as my family and I are concerned he hung the moon. It was his due diligence that discovered I had a tumor. He wanted to be thorough and if he had just dismissed me as whiny and having migraines my story might be very different. We all thought he was great when 20 minutes after my first MRI he was calling me about it. We had no idea how much more was coming. My surgery was on a Thursday and on Friday morning my primary care, Dr. S, walked in “because he was in the neighborhood.” I was floored. He had no reason to be there or come see me. He doesn’t admit patients to the hospital or make rounds. His office was a half mile away on a moderately busy street. He really had no reason to be walking down the hall of the neuro ICU, but there he was. That’s how nice he is, he was worried about me. I’m just one of hundreds of his patients, we don’t know one another outside of a patient/physician relationship. I got discharged on Monday and my blood pressure was high so I needed an appointment with my primary care to sort that out. My husband emailed him through the patient portal on the non-urgent message service to request an appointment. They tell you it may take 48 hours to get a response. He called directly to my room within 20 minutes. He scheduled an appointment for me and asked if there was anything else I might need. I am pretty sure my dad has added him to the will.

Now the more negative portion of the post begins. Not every doctor can be like the ones described above. These guys are people and people come in all personalities. Some of them have ugly ones. My first visit with my oncologist was actually really great. I had had surgery not long before and my husband and parents came with me to the appointment so everyone would have all the information. I may have been 28 but I wanted my mommy. Dr. J explained everything and told us how treatment would go. We all felt really good about him that first visit. I honestly don’t recall exactly when things went off the rails, but they did. I was not skinny before I got sick. Once it was determined I had a lesion in my brain, I was put on steroids. I was on steroids for about 6 months. My dose was not nearly as high as many people get, but it was moderate. Unfortunately they made me hungry. Like hungry, hungry hippos on… steroids I guess? Seriously I gained so much weight. I also retained water like it was my job. I am planning a whole post about steroids, but they were bad. They helped me not have pain, but they had lots of negative side effects.

So, I was fat and sick and very tired. I’ll be honest, I’ve lost about 50 pounds since my heaviest and I’m still fat. I’m working on it, but my new normal doesn’t allow for much. So, I’m sitting in his office in January or February and he’s telling me that I’m fat and constantly asking how my diabetes is. I don’t have diabetes. He never seemed to know anything about me when he sat down in my appointments. What a pep talk! He kept telling me that I was “all better” and “cured.” I was not all better. I knew that, anyone who was around me knew that. The fact is that astrocytomas come back. Some people choose to use phrases like cancer-free, but I do not. I know that, I think he knew that. I also was trying my best. I was still so foggy then, I was doing everything my body would let me do. At that point I was sleeping most of the night and day. Not to mention still taking chemo every month. He insisted that I was making a huge deal out of nothing. That’s when I started hating him a lot.

By the summer our time together was coming to a close, I only had 1 more month of chemo and then we could be done. I was “cured” after all. It’s important to note that telling someone that is really misleading. If I had been just anyone off the street I might have falsely believed him and made bad decisions. My main question was, how the hell am I “cured” if I’m still needing this chemo? He never had an answer on that. I think it was July and my husband and I were sitting there while he demeaned me. At that point I never went alone to the appointments so that I would have a witness and frankly, someone to cry to after. He suggested many things I could do to lose weight. I was doing some of them. Others, were kind of impossible. Not only because I couldn’t physically do them, but because he suggested shoveling snow. No kidding. In July. In Oklahoma. We don’t have snow then. I guess I could have gone outside in a winter coat with a shovel and pretended to shovel snow? That was also the appointment that he suggested we get a goat because they make better therapy animals than dogs. No, that happened. I had a witness to that crazy. Bear in mind, we lived in a condo and I don’t think goats like to live indoors? We still joke about that.

I’ll be honest, that was our last time seeing him. I cancelled my next appointment for after I was done with chemo and decided we could be done. I don’t suggest doing that, I normally would never do anything like that. But, I had gotten all the treatment for now, and after all I was “cured.” I actually wrote a long letter to administration after my last appointment about the things he said and some other practices I saw him doing that I didn’t agree with. I guess he saw the letter because I got an email from him about how we had a misunderstanding and I was wrong. No need to reply to that one. If I need an oncologist again I will obviously choose literally any other doctor. I would try to avoid the building he’s in if possible, but I will cross that bridge when I get to it. I know another woman who goes to that doctor for a different cancer and she loves the guy. Maybe it’s me? I don’t know. I do know I’m glad it’s done.

I am saying all of this to point out that in your journey with disease you will come across all types of doctors. I think that working in surgery with so many different personalities really was an asset to me. When you work in the OR you figure out quickly that not everyone is nice. It’s a stressful environment and everyone deals with it differently. However, I would rather be treated poorly by an excellent doctor than treated kindly by one who isn’t as good. That was true at work and is still true in life. I think the biggest insight from the OR was learning how old school doctors are. They aren’t always nice, but they know what they’re about. I stuck with my oncologist because I didn’t realize what he was like until a few months in, and by then there was no reason to stop my treatment. So I had some crappy appointments? I will readily admit that I got my feelings hurt a lot, I even cried after a few of them. But, I had to get through treating my tumor. It was the simpler thing to do. Next time I know better, but I don’t regret the decision I made to just power on. I’m sure my oncologist is still recommending goats and snow to other lucky people.

Radiation is a large part of most people’s brain tumor treatment. It was part of mine. There is a lot to cover when it comes to radiation, so please bear with me. I’ll be honest, the only concept I had of radiation was the long treatments my brother had. I never went to them, but I know they happened and that they played his favorite music for him. One thing I have noticed is almost universally about people who work in radiation oncology is that they are really nice. Honestly, I never consistently experienced so many kind people in any other area of my treatment.

I’ll say it again, I am lucky. It’s good for me to remind myself of that because some days I don’t feel that way at all. I have a really incredible family that, for the most part, lives locally. I live about 20 minutes from the hospital now, but at the time I was doing this I was living about 1 mile away. Just because they are awesome humans my cousin and my aunt took turns taking me to radiation every single day. That meant that my husband didn’t have to leave work to do it. I really think they would’ve done it anyway, even if it hadn’t been so close by. I was still afraid to drive at that point and I really did not want to go alone. They volunteered without me even having to bring it up. I had 25 treatments over 6 weeks. They took time out of every week day to come get me, wait with me, and take me home. Another huge benefit was that once a week when I saw the doctor they would sit with me and help me listen. I’m planning a whole post about brain fog, but mine was at its worst during this time.

Before you can start treatment you gotta get yourself a very cool mask. You go in and have a CT and they mold this wet thing to your face until it hardens up. Lucky me, the first one wasn’t right so I got to do that process twice in one day. It is not nearly as bad as it sounds, it feels like a wet towel on your face. Before I ever went through this other people kind of freaked me out about having to be locked in with my mask on my face. Admittedly, it’s not normal feeling but it’s not bad either. Pro tip: Don’t do that. Don’t talk to someone about treatment and then get a weird look on your face and say, “Oh my gosh! You’re going to have to wear one of those mask things!” It’s not helpful. If I was to sit and talk to someone about it I would describe what happens and tell them it isn’t so bad. You know what? It could be the worst thing ever and it does not matter. The person still has to do it. So, why freak them out?

The point of the mask is to hold your head in one consistent spot so they can target the area they want to irradiate. It’s yours and when you are done you can take it home if you want. It is the strangest souvenir ever. I have mine hanging in my closet. Kind of like a trophy mount. I done kilt that there brain tumor!

The way my facility worked was simple and very efficient. As a former surgical tech I can really appreciate efficiency. After your first visit you got issued this little card with your info on it. It was really just a sticker on a business card. So fancy. When you arrived for treatment you walked in the waiting area and scanned your card. That’s it! I wish I could do that everywhere! Other doctor’s offices, the imaging center, a restaurant. Beep, I’m here! Then the fun begins. Where I went they had tons of puzzles all scattered around the waiting room. Is that a universal thing, or just a Oklahoma thing? I’m genuinely curious. You could work the puzzles with the other lovely people waiting to be nuked. I met several very nice people there who were either getting radiation or waiting with a loved one. It’s kind of a macabre club that you belong to. Since appointments are always at the same time you see the same people every day. You see them struggle with their illnesses, with complications of the radiation. One thing that sticks out to me the most is a woman who was there with her husband. She was always knitting. One day she walked over to me and took off this beaded necklace and gave it to me. Just to brighten my day. She didn’t know me at all, she just wanted to make me smile. She said I needed it because it matched my chemo hat. I still have that necklace hanging on my vanity and I will always have it.

So, once you’re scanned in you wait until it’s your turn. I come from a long line of early people and I am no exception. We were always there at least 15 minutes ahead. When it’s your turn they call you over the speakers. I referred to it as the voice of God. I was always in the same room, number 2 if you’re interested, so I went right there. I would take off my hat and glasses once I got back there. I was very grateful that I never had to walk around without my hat. I was very self conscious about it. One of my techs was always in the room to greet me and help me on the table. The mask attaches to the headrest of the table so that your head is always in the same spot. My treatment took about 20 minutes and then someone would come unlock the mask and help me up. My room was always the same but my techs changed every 2 weeks. I got to meet many different techs and they were all wonderful.

One day a week everyone would see the doctors. This day always took a little longer than the rest because these guys took the time needed with each person. I never mind waiting for a doctor like that because I want them to do the same for me. My visits were always really short because I didn’t have any serious issues with treatment. I lost hair and had a little minor scalp irritation but it was nothing compared to what I saw other people going through. When I first went for a consult the doctor gave me a list of products that were OK to use during radiation. The only things that really applied to me were shampoo and lotion. Guess what shampoo is recommended? Johnson’s Baby Shampoo, the original yellow bottle. I’ll be honest, I bought a large bottle because I was used to long hair and I kept using it until I ran out, like 4 months after radiation had ended. It turns out that when you have no hair it takes very little shampoo.

One thing that is really important is maintaining a consistent weight during treatment. Everything is based on your weight so it needs to be as stable as your skull. One time when the nurse was weighing me she said, “Oh my gosh! He’s going to be so mad at you!” What? Allegedly I had lost 40 pounds. In a week. It’s not that I couldn’t stand to lose the weight, even now, but I really hoped I would notice if I lost that much. We tried another scale and everything was back to normal. I had some headaches from radiation, or maybe from having brain surgery. I don’t know for sure, but other than some little burns I got off easy. So many people get radiation burns that just look so painful. I look back at radiation fondly as an easy thing, but I know not everyone gets to do that.

What sticks out the most to me are the people involved in my radiation treatment. Not only the great techs and nurses, but also my doctors. There were 2 radiation oncologists who saw all the patients interchangeably and they were both smart, compassionate, and kind. There are so many more people that made it easy for me. My aunt and my cousin who took me to and from treatments. Even the valets who would park the car for us were fantastic. The hospital I went to offered free valet parking in the cancer center. It makes complete sense really, everyone coming in there was there for radiation or chemo. Everyone felt like crap, it was nice not to have to walk from the parking garage.

I know not everyone has this experience. My hair grew back slowly, but it came back. My doctor was very upfront with me about the fact that it may not return. Honestly, I always hoped it would come back but if it hadn’t I had started researching wigs. I figure if wearing wigs is good enough for Dolly Parton, it’s surely good enough for me. When I was going through radiation it was around Thanksgiving and between my cancer and the holiday I really didn’t get much time to think about it. I was never scared about radiation at all. I was never angry about it. I think a lot of that was because of how great the people were. I never stopped to think about the bad stuff. It also really helped that every time I went I was with a person who loved me. They never made it feel like it was an inconvenience to them to be there. They never greeted me with anything other than a positive attitude. If you are involved in this part of someone’s care, do those things. It may not seem like much, but it changes everything. You don’t have to be Mary Sunshine or fake, just don’t be negative and you’re helping!

Your nervous system has this really cool feature called the Blood Brain Barrier (BBB). It allows only selective molecules into the brain tissue. The purpose of this is to help protect your very important brain from chemicals and toxins that shouldn’t be in those tissues. It’s a wonderful thing, until you want to actively poison your brain. Because of the BBB only certain types of chemo work on brain tumors. There are very involved science reasons for this, but when you’re needing the chemo none of that matters.

When it came time to poison myself I was prescribed Temodar, which is what many brain tumor patients get. Why? The BBB only lets certain things through and Temozolomide is one of them. The interesting thing about chemo for any cancer is the idea that you are being poisoned. I had a tough time with that idea. No matter if your chemo comes in pills or a port, it’s poison. It’s hopefully good poison that will kill the bad tissue without killing you though.

One of the hardest things for other people to understand about my chemo was that it was in pill form. People are kind of used to the idea of a port and going to the hospital to get infusions. That is chemo to most people. My chemo came in the mail from sunny Florida. I’m sure there are several places that distribute Temodar, but mine was in Florida and I they were awesome. I never had to call and schedule a delivery, they always called at least 2 weeks in advance and were really nice. When you feel like hammered death, it’s the little things that stick out to you.

For me personally, I didn’t experience outright hair loss from the chemo itself. I had a lot of hair loss in the area where I was given radiation, but the chemo only stunted the growth of my hair. The bright side was I didn’t need my eyebrows waxed nearly as often. I had shaved my head after surgery and I chose to wear chemo caps instead of a wig. It’s a personal decision and I liked the ease of the caps. Plus, I have a bunch of them and could match them to my outfit. If you need some I suggest Etsy. About 4 or 5 months after radiation my hair grew back to the point where I was comfortable wearing it without a cap. When I started that people would, and still do, come up to me and tell me my hair had grown back darker or wavier. I’ll be honest, my hair was the same as before, but people are used to the idea that you lose all your hair during chemo and that it comes back different. When someone mentions it I just smile politely and say, “Do you think?”

That’s one thing that makes chemo weird for us brain tumor folk. The majority of people just don’t have a concept that there are options other than liquid chemo. I didn’t have a problem with that, the people I was around all cared about me and wanted me to feel cared about. For me, the hardest part of the chemo was doing it for so long. I took a dose all through radiation and then switched to taking it 5 days a month for 8 months. Eight long months. I had Zofran to help with any nausea from the chemo, but there were so many other exciting side effects. Chemo made me even more tired than normal. That was impressive because fatigue has been and still is a huge problem for me. It also made my body ache and just generally feel like poo. I would take it for 5 days, then spend another 5 days or so trying to feel better from it. Next thing you know, it’s time to do it again! It honestly took all of my willpower to keep taking those pills every time. I didn’t want to feel worse. I am an adult, no one could make me take it but I knew it was for the best for me. I was beyond thrilled to be done with it, but I know I’ll likely do it all again someday and I know that I’ll take it again no matter how awful it is for me. It beats the alternative.

One thing I want to mention before I close this post is how fortunate I am to have great health insurance. You don’t think much about it until you need it. Because my chemo was generic I only paid $10 per month of it. I only took 10 pills, but without insurance they would’ve cost about $3000 from my pharmacy. I’ll be frank, there’s no way we could have afforded that and it’s sickening that some people have to make those choices. It makes me angry frankly, we are all just fighting for our lives and money shouldn’t be a hindrance in that equation.

Chemo was one of the psychologically harder parts of cancer for me. I found that if I just didn’t think about it, it was easier to deal with. I also never got over the novelty of chemo coming in the mail. My UPS guy brought me chemo every month. During chemo there were all these precautions I had to take. I had to flush twice for some reason. I had a separate pill minder for it that I threw out after I was done. I handled it with gloves. But I was supposed to ingest this? When you’re going through tough things like cancer it’s good to find humor where you can. That can be off-putting for your loved ones, but it’s important. I saw the humor in how nasty the chemo was and the fact that I was supposed to just swallow it. It’s poison, you are bathing your brain in. It’s nuts that this is what medical science has come up with. You can get potent drugs delivered to your doorstep! What a time to be alive!

Note: In this post I discuss the steps of a brain surgery so if you don’t want to know, please don’t read this.

So, maybe you’re wondering what a craniotomy entails?  I know there are lots of explanations and videos out there that will do a better job than me showing you.  That doesn’t stop me from writing my own How To Crack A Skull post.  I’ll never forget my first craniotomy and seeing the living human brain.  It took my breath away honestly.  While I was working in the OR I did many craniotomies for tumor.  I did more I think for acute subdural hematoma than anything else.  The beginning of the procedure is fairly similar no matter why the surgery is being done.

I had a BrainLab guided surgery which changes a little of the prep part of the procedure.  There are other navigation options other than BrainLab, but that is the one my facility uses.  Navigation requires that you undergo a special MRI in the weeks before surgery that takes thinner slices and generates more images.  I had mine a week before my operation.  It took a little longer than the standard MRIs I had been getting but otherwise was exactly the same.  Once you are asleep in the OR the fun starts.  To effectively use a BrainLab system your head had to be in one still position for the entire procedure.  This requires a 3 pin headrest.  It looks very much like a torture device that has really sharp spikes in it and clamps on to your head.  It looks barbaric to see it put on, but trust me you as the patient feel nothing.  I had no issues from the 3 pin after surgery and never would have known I was in it if I didn’t have surgical experience.  Once you are positioned the doctor will do some skin mapping with the machine loaded with your MRI.  This calibrates everything so that the doctor can use a special probe during the operation to see where he is in relation of your tumor.  Navigation really makes tumor removal much more exact.  There is a very technical explanation for all of this but I’m not a tech writer.

Now that you are asleep and ready to go the actual surgery starts.  Whether or not your doctor uses some navigation system everything from here on out is very much the same.  I will be explaining how the doctors I personally worked with did surgery on me.  I’m quite sure other doctors in other places have differing ways of doing this but I can only speak from my own experiences.  No matter how the procedure is done, if you trust your surgeon it is done the right way.  Depending on where your tumor is the surgeon will decide what manner of incision to make.  My tumor was in my right frontal lobe and so I ended up with a kind of modified coronal incision.  My scar isn’t quite from ear to ear but it begins abut 3 inches above my left ear and goes almost all the way to my right ear.

Once the skull is exposed and any bleeding from the scalp has been stopped it’s time to drill.  This was always my least favorite part as a tech.  There are many types of drill and drill bit out there in the world, but we used a pneumatic system and a round 4mm bit generally.  If this all sounds like wood working don’t get freaked out.  It’s a little like woodworking.  In fact, when explaining the next step to students I would always ask if they knew anything about wood working and routers.  My particular surgeon drilled 4 burr holes and then used a router bit to connect those holes.  Then your bone flap is removed and handed to the tech for safekeeping.  As a tech all my bone flaps were kept safe and returned to their rightful owners.

Now the dura mater is doing its thing.  It literally means tough mother and is the tough covering of your brain.  The dura is cut and opened up over the part of the brain being worked on and then the actual tumor removal begins.  The surgeon used the navigation probe to determine exactly where to start removing tissue and then got to work.  There are several ways to remove tumor tissue and the method the doctor uses is generally determined by the tissue itself.  I don’t know exactly what my doctor did to get the tissue out because I wasn’t told the consistency of my tumor.  I’m perfectly fine with that little mystery.  Lab specimens get sent for permanent and frozen studies which can help determine how aggressive the resection needs to be.  Once the doctor is satisfied with the removal or debulking of the tumor it’s time to close up shop.

First the dura is closed with a permanent stitch.  Then the bone flap is put back on.  Humpty Dumpty must go back together again.  There are a few ways to secure a bone flap but all the doctors I ever worked with used a small titanium plating system.  I have a small circular plate over each of my burr holes because that’s how my surgeon plated nearly every skull.  Tiny little 4 mm screws were used to attach the plates to my bone flap and my skull to keep it all together.  Interesting aside, while my bone flap is very secure and strong sometimes when I roll over at night it makes this little crunchy noise which freaked me out so badly at first.

Now the scalp must be closed which is involves a multiple layer closure.  Generally an absorbable stitch is used to close the galea which is the tough layer just under the skin.  The skin is closed in several different ways.  Many doctors use a surgical stapler, but mine used a running nylon stitch to close my scalp.  He generally closed scalps that way because it looked a bit nicer and at the end of the day the scar and incision is the only thing a patient sees and judges the doctor by.  The scalp stitches were removed I think 10 days or 2 weeks post op in the office.  I also had a drain under my skin for 1 day post op.  The drain freaked my husband out so much even after I explained that it wasn’t in my brain or anything.  When the drain was removed in the hospital I didn’t even really feel it.

You should remember that before all of this ever begins your head will be shaved somewhat.  Some doctors are more conservative than others with hair removal.  It also depends on where your tumor is and the doctor’s plan to get to it.  I had offered to shave my head before surgery day but my doctor assured me it would be ok.  Bless his heart, he ended up shaving the front half of my head.  So I had no hair and then my very long hair in the back.  It was the world’s most extreme mullet.  I got the rest shaved off a week after surgery.  It was so much better then and my hats fit.

I hope this enlightened you a little and didn’t freak you out.  Brain surgery is wonderful but very scary to go through.  I knew every little step my doctor was going to take.  I knew every little quirk of how he liked things to be during an operation.  I knew that the guy in the room setting up for him would have every tiny thing in perfect order and that my nurses would be on top of any complication.  I knew his PA was awesome and that she new the ins and outs of her job perfectly. I knew that the attention to detail and compassion of the staff would be as top notch as I had witnessed many times before.  I was still absolutely scared.  I felt like understanding the procedure gave me some agency over it because I wasn’t a passive player in it.  Some people may prefer not to know what happens, but I was glad that I knew.  What is, I think, universal is the trepidation you feel when it’s time to get down to brass tacks.  That fear is totally justified and no one should make you feel bad about it.

There are over 120 types of brain tumors.  Obviously, I can only speak to one type.  I know about some of the other types and try to learn more everyday, but I have only had one.  My tumor is a Grade II Astrocytoma.  I fully understand that I am lucky when it comes to malignant brain tumors.  My tumor will most likely return in the future, but I will get at least a few years before that completely happens.  I also got really lucky when it came to tumor location.  My tumor was in my right frontal lobe and was able to be well resected without causing me any real cognitive harm.

My little tumor was shipped off to a lab at Johns Hopkins to be examined.  Grade II tumors are not super common so my doctor wanted to make sure the staging was done right.  It’s not like you can get a second specimen you know?  All astrocytomas above grade I are considered to be infiltrating.  That means little tentacles of tumor grow into the surrounding tissue and they can’t be fully removed.  That is the reason that these tumors come back even after a solid resection.

I think the most difficult thing to wrap my head around after I accepted that I had a tumor in my brain was the idea that it would come back.  I would do surgery, radiation, chemo, anything they told me to.  But, the tumor would still come back.  I would do those things again, in fact I most likely will have to.  Why?  Because even though those things sucked, it beats the alternative.  A big part of this blog is going to focus on the flares of strong emotion that come along with going through this trauma.  That’s exactly what it is by the way- trauma.  I know that sounds dramatic but it’s not.  Brain tumors attack at an intimate level and leave very little changed in their wake.  It is ok to react to this.  I try very hard to remember that people are as happy as they decide to be.  I try to decide to be happy, but there are moments through the last 2 years when other things took over.  Just like that stupid tumor tried to take over my frontal lobe.