One month ago I had brain surgery

It’s been one month, dun duh dunnnnn, since my surgery and I am beginning to feel “normal;” a fatigued wobbly new version of myself.

My scar at one month

 Often during my slow granny inspired walks, I will randomly start moving sideways, usually bumping/catching myself on a wall. Luckily, I am never going fast enough to cause any damage.  When I am still, I will suddenly feel like I am in a boat on incredibly choppy water. My body will think its violently moving up and down while my eyes look forward and know that I am perfectly still. Vertigo is quite a trip and still novel for me. If I wait too long, though, to do the vertigo exercises my stomach starts to churn (never enough to make me puke, though).

Exercise for vertigo that I found:  http://www.youtube.com/watch?v=Fo-xeZtDFws&feature=related. In the video, she says to do it ten times which is impossible for me. I just do it once or twice and it works most of the time. Also, I hold the positions a good couple minutes instead of five seconds (I just can’t move that quickly without getting dizzy again).

While my chest appears to be healing, my rash is spreading to my shoulders and neck.  As it migrates upwards the bumps appear to start looking more like pimples. Which is weird because my skin is incredibly dry. I have told my nurse and PA about the rash and they don’t seem concerned but still referred me to a dermatologist. I have looked up all of the drugs I am taking and have taken and it looks like the rash is a side effect from the dexamethasone.  

rash on my sholder

All of the physical manifestation, aside from my head and some swelling on my right rib, appear to be from the steroid. I know post surgical stupid me thought pain medication was causing my nightmares and discomfort (maybe because I knew I could stop taking them and needed the sense of empowerment) but Micromedex, a drug database, indicates dexamethasone as the culprit. Dexamethasone is used to treat cerebral edema or the collection of excess liquid in your brain. This collection of liquid is due to your neurosurgeon busting through your blood brain barrier. You take the steroid to decrease this liquid pressure keeping you alive and making you a lot more comfortable.

The dermatologist told me my current rash is steroid acne. I was told me to keep it clean and dry and to put nothing on it and wait. Waiting is what everyone keeps telling me to do. My head hurts, “well that’s normal, it will go away with time.” I am incredible fatigued, ”well you just had major surgery, that will go away with time.” I am growing a tale and believe I can fly “ ok, well with time that should clear up.”

Despite slight discomfort, I feel incredibly lucky. An overly eager resident in dire need of sharpening her patient interaction skills told my mother and I that my tumor was wrapped tightly around some important blood vessels.

“It was such a complex surgery, we are so glad you didn’t have a stroke,” she seemed to exclaim over and over again.

I am glad, too. Thank you for scarring me. But I can’t be too angry. I didn’t have that stroke. And all those side-effects that I had to sign off on before the surgery did not happen. My surgery was a complete success. I am so lucky.

I had a large brain tumor. The neurosurgeon thinks he got all of it out despite spreading to the brain stem. It was benign. And all my side effects are supposed to go away with time. I am lucky. 

Its been 12 days since my surgery

I am ridiculously tired, all the time. Everything takes so much energy. I spend most of the day sitting. I am incredibly bored out of my mind. And it’s hard to find things to do.

Watching television, talking to people, and reading for extended periods (more than 20minutes) is incredibly taxing. A lot of noise and visuals really exhausts my eyes and ears. I often need to get out and close my eyes for a minute to collect myself. My friends, before my surgery, got me a coloring book as a small kind of joke in a care package they made for me. It’s actually quite calming to color. I feel stupid writing this. Buts its quiet, I get to use my hands, and it doesn’t mentally exhaust me at all. It’s really nice actually.  

What isn’t nice is my moods. I yelled at my mother today after she told me we should write a thank you note to the neurosurgeon. Why? I have no idea. I also cried while watching a tree today. Why? Again, I don’t know. My mood swings between extreme depression, anger, and lovey doveyness are borderline psychotic.

It’s weird that these emotional side-effects, expected from the steroids, are only hitting me now. I am almost done tapering off of them actually. I started off taking 8 x 2mg tablets a day of dexamethasone. After 5 days that was cut in half. Then after 3 half again. Now, I am currently only taking two a day.  But only now do I notice the stereotypical mood swings that you hear about on the news when a body builder up and kills someone randomly.  

There is also a giant energy serge whenever I take the pill. I feel like walking around the hole house and get a little anxious. This makes sleeping tough. I take ambian and its gets me a couple hours at least. But I wake up periodically over the night. After I take the Ambian, my whole body heats up.  It’s a really intense rush of sleep and then I am out

Drugs side effect update:  I still have the rash on my chest but it doesn’t seem to be getting worse or better. I have mood swings. Very fatigued. I have some sort of bacterial infection in my mouth called thatch. (I scrape my mouth clean with a metal spoon and warm water. Brush, floss and use antiseptic (with alcohol) mouth wash three times a day. Its keeps it at bay, I think. The regiment definitely makes my mouth more comfortable.) My heart is tired. Its feels sore. My knees, my hips and my calves are really sore. Rubbing them and light walks help.

Function update: I still feel like there is something pressing my head. Its hard to move my neck. I get these shocking sensation along the excision. My head feels like it weighs nine hundred pounds. Lots of lights and sound are very exhausting. Hearing is not full on my left. My left eye is lazy.  Every hour or so I I get a dizzy spell. Sometimes, if I lay too long the room starts to spin. No more double vision. 

Pain is actually none. I am taking only half a hydrocodone pill (which is only about 5mg vicodin and 160mg of acetomainphen) a day and I feel no pain. I might try none tomorrow. The pain is not the problem. The dizziness and pressure are.   

I have to consciously work to try and be aware of my emotions and my behavior. The people I am lashing out at are the ones who have been patiently have a helping me through this hard experience. They stay with my boring butt, feed me, help me. And I am yelling at them.

I will be writing a thank you note. 

A small lapse in recovery.

Today was the first day since the surgery that I started to feel like myself. My drugs were finally being tapered down. I am about to take to less dexamethasone. The doctor prescribed me ambien to help me sleep. And it appeared to work. And the sleep really was the best medicine I could imagine. I don’t really need much pain reliever support anymore. I can pee like abnormal person. And yes, I am tired, but I can talk and function pretty normally.

I took a shower. Put normal people clothes on. A bra. It was great. Even did Christmas shopping among the crazy other Americans today.

Everything was great ‘til this afternoon. I noticed that things were a bit out of place. Weird things had been moved around the house. I was particularly tired despite thinking I had finally gotten my rest. And nothing was where I had left it the night before.

Needless to say, I don’t think I was actually sleeping last night.

Regardless, I still felt ok and sat on the floor of my living discussing, with my mom, the events of the upcoming holiday. My cousin wants to have this shotgun wedding (quick but with all the trimmings and elaborate expense) with this guy no one knows and we were trying to figure out gifts that would be appropriate and comfortable in the rather weird situation. She wants to get married so fast and soon that she is having her wedding engagement party (which she will be having two of) next week. A mere two weeks after my major surgery that was planned 5 months ago. She planned the dinner two weeks ago—the week before my surgery. Because… she loves me? And it’s obvious that my illness affected my only cousin’s life. …

She is selfish. I really try to like her. I am gonna work towards ignoring now.

Anyway, while sitting on the floor, I think I fainted. All of a sudden things stopped making sense and it felt like a shade over my life. Words got really jumbled and confusing and my head started spinning violently. I had never experienced anything like this yet.  I remember repeating over and over again out loud that something was happening. After a failed attempt to get a hold of my neurosurgeon, my mom’s friend Melissa, my mom, and my fiancé all rushed me to the emergency room who upon hearing my past medical history took me in pretty immediately. We did not take an ambulance upon my request. Which might have been stupid? But I wanted to tell myself that I probably just fainted instead of have a stroke. And ambulance would have made this game of make believe quite difficult.

I was panicking quite severely when I got to the emergency room. I was scared out of my mind. I know the risks for stroke and while they are supposed to be a lot better right now they are still there. And I am thinking about them. There was extensive blood vessel innervations and excision during my brain surgery. My tumor had several major blood pathways running through it. It was the trickiest part of my surgery. So, my fear is warranted. It’s actually why I am taking the steroids, to help prevent the stroke.

******************************************************************************

Everything about my life has to do with this steroid. As a practicing student pharmacist let me give its break down:

Dexamethasone (generic name)

Pharmacololgical Catagory	Purpose of drug category (what it says the drug actually does)	How it helps me?
Anti-Infammatory Agent Antiemetic Corticosteroid, Systemic	Reduce inflammation from immune response Anti nauseas and vomiting. Helps with vertigo Reduces inflammation, vertigo, and  swelling	Reduces brain pressure. Decreases vertigo. Helps me eat and keep things down. Lets me feel, pretty much, like I didn’t have brain surgery.

There are a lot of side effects and things that act up with these steroids. And the side effects, such as adrenal suppression (decreasing the amount to mineral corticoids in our body. Its why my skin is so thin and I bruise so easily all of a sudden), immunosupression (its easier to get sick), Stomach ulcers, fluid retention, heart problems, eye disease, osteoporosis, kidney disease, seizures, thyroid disease, and diabetes. YUCK. But I have to take it to prevent the stroke. So, I take it.

On top of all the side effects (which my above list is only a sampling of, there are a bunch of stuff in the environment that you have to avoid. You should not take anything with Bile acid in it. You cannot take any antifungal or antidiabetic agents. You should not take antacids. You should not take conivaptan, cyclosporine, Fluconazole, Fosaprepiatent, Geftinib, NSAID (like Ibuprofen or aspirin or naproxin ~~also known as Tylenol, advil or alleve over the counter.) Vaccines, trastyzumaub, warfarin and much much more. You should not take anything with this pretty much.

They all cause the side effects to be more severe and prominent.

bruise on my write. Just from it being held lightly.

My rash on my chest

So, I guess I should be lucky that I finally get to taper down my dose tomorrow. And hope for the best. Right now, my symptoms are lack of sleep, a rash on my upper chest and some sort of bacterial infection in my mouth that no amount of mouth watching or brushing can remove. I also bruise very easily.

So, back to the emergency room. They brought me in and made sure I was stable. ECG, blood work, CT of the head etc. I waited 3 or four hours for an ok from the neurosurgeon and radiologist. They didn’t think I had a stroke. And at this moment snap shop at time they said I was good to go. During the whole visit my vertigo was unreal and unimaginable. Everything was in constant movement. It was miserable.

On a side note, while I was waiting in the emergency room with my paper gown, blankets, and ever omniscient sense of doom, my aunt and cousin had came to the hospital and promptly left. After my mother didn’t swoon and thank them for coming to see me, my cousin felt she had been scorned. Apparently it had displeased my cousin that she was not even been acknowledged by my mother immediately while her daughter who had just gotten brain surgery was being examined in the emergency room for stroke. It displeased her so greatly that she made my aunt leave with her. My aunt would even try and call my mother, who was still in the emergency room at the time, to tell her what she thought she had done wrong. My mom did not speak to anyone in the emergency room by the way (good or bad); she was petrified.

I guess it is possible for people to truly be incapable of seeing anything past them. This situation is so bizarre, it feels like there is no way it could be true. But it happened. And I am embarrassed for her.

Regardless to say. I am proud and o so happy to reports. I AM OK! The doctors don’t know what happened. But the hypothesis is that I may have pushed myself too much. They told me to take it easy. I think I did not sleep last night on the ambien and that when the over exertion took place. I think all of the stuff out of place from last night was from me. I am taking it really easy today to try and prevent a repeat. And my fiancé will be sleeping besides my bed in case. It could also be that the vertigo is getting worse, too.

Here is hoping to a better today.

Mroe pain vs. more sanity

I went to the doctor's today. Not my neurosurgeon but the many who are in charge of taking care of me post surgically. He took out y apparently long single stitch. I was hoping for a number like 1 or stitches or something was sad to discover they only count the 10 inch line done my side of the head as one stitch. Not very bas ass.

But still pretty bad ass.

I switched from the hydrocodone to combinations of ibuprofen and Tylenol. Everyone was almost angry about my accusations about the hydrocodone causing me anxiety. They were all convinced that I was mistaking it for the steroids. But while it was not probably directly creating my heart to pump and pain to scorn, I think the hallucinations I were getting was. And while, I am a little bit more uncomfortable today. And still not sleeping. I feel a lot better. A lot like myself. And I did not hallucinate or have a bad dream. Maybe its me and I psyched myself. Maybe its all in my newly operated hopefully brain tumor free brain. Either way, I could care less. No bad dreams tonight.

They give you a lot of flexibility in what you want according to medications. At first, especially when you are doped up on narcotics, it’s frustrating. They ask you things like what do you want.? And all you want to scream is HOW THE FUCK AM I SUPPOSED TO KNOW WHAT I WANT ,MY HEAD FEELS LIKE IT WEIGHS 900 lbs AND I AM IN PAIN, and YOU WANT ME TO MAKE DECISIONS.  You don’t scream. You answer in a pale fatigued grasp of a voice. It’s hard to project.

Right now I would judge my pain at a 6 which is pretty good. (One being no pain and 10 being the worst pain imaginable) I mean in twenty minutes I might have moments of 8 or 8.5. But right now a steady six. I haven’t been at a ten since the first days of surgery.

Uncomfortable but doable. These aren’t a normal days after all, I am healing.

What I think, I HAVE DECIDED, to do is switch between the hydrocodone and non-narcotics for one more day (tomorrow) and then stop taking the narcotics all together. I am not doing this for fear of addiction or anything like that. It feels good to have a strong stable body while I am healing. My body feels like mine again. And while druggies around the world my look upon me with disfavor. I say to them: You f*ing idiot. You could use you head with no pain and you don’t. Do you have any idea what its like not be able to?  

Its amazing how fast the scar is healing. After stitches out, all you see is a line.My hair grows fast and seems to be engulfing the scar nicely..

The Nightmares are consuming

 

I am having incredibly intense nightmares with hallucinations. So, vivid that they shake me from my sleep. My dreamsor visions are so strong that sometimes I have to wake myself to remind myself that I am not there. I am very scared.

At first, I though that maybe it was just a brain acting up thing and to go with it. I could remind myself of reality by just opening my eyes. But the pain and the fear are building on me.

I am beginning to think I am having reaction to NorCo. I was prescribed Hydrocodon-Acetaminophine but dispensed the brand name NorCo. Does NorCo have any additional side effects compared to other brand names?I think I am having hallucinations.

The anxiety is so intense that my whole body will shake from my scar all the way down to the pit of my stomach. I am desperately reading through lexicomp (a pharmacist database that I have access to) trying to find any indication of my side effects and am not really finding anything. As I read I am beginning to feel increasingly more paranoid and anxious. I am scared. These emotions are so overwhelming and it’s only two in the morning. But it feels better to be up and to know what up and down is.

I will be getting my stitches out today. I will be asking about my prescription. I really hope that they are the reason for these dreams and sensations and are not permanent. I don’t know if I can live with these hallucinations.

POst Surgical Update

It’s been about a week since my surgery. And I am still here. I made it. The surgery was long and I am not going to lie the recovery is tough. But I made it.

I was at the hospital at about 5:15am in the morning this past Tuesday. As I changed and was being prepped by the nurses in the preop room, two family members were allowed to see me at a time. Each coming in a little more nervous than the next. My nurse was amazing. She kept me calm and allowed me to get watery eyed without making me feel ashamed.

The anesthesiologist came in several times to check in with me an answer questions. I didn’t have any. It was two hours before the surgery at this point and I didn’t know the point. It would just panic me.

The last thing I remember is being wheeled away and then I woke up.

The pain on the first night was unimaginable. Every time, I opened my eyes my eyes were spinning (literally they’re complications with my nerves). I could not stop vomiting. Everything hurt. To add to the nauseas they have you attached to all these machines that keep you moving to prevent thrombosis. The bed is moving slowly and they put these pads that massage your legs. Add a catheter and it’s a shit show and a half. I was in hell.

I had a panic attack the next night. I never felt my heart beat so fast. The poor residents sent to check on me did their best to calm me. But it was just too painful and uncomfortable.

Honestly, IT WAS ALL WORTH IT. I took me about a day to understand but after they told me they got all of it I felt like I won the lottery.  After about 24 hours after my surgery all my symptoms, while still severe, were at about half. This implies that most of my symptoms were from anesthesia. (Which is what my anesthesiologist, probably kind of knew, and why he kept on insisting on asking me questions)

I am getting back to life now. I cannot really hear out of my left ear. And my body is incredibly sore. My rib on my right side, the side I was laying on during my surgery, bothers me the most tonight. But it changes from day to day. Walking and light stretching (trying to touch my toes without letting my head fall) on the floor really really helps. They give you this lung machine to practice on the help defend against pneumonia and relief body stiffness but it sucks. Its really tiring and makes me loose my breath. I prefer the stretching. My vision has greatly improved. I sometimes don’t see double which is great. And I can read a couple pages of a book before I get too tired. Background noise is really nice but too much can be alarming.

This sounds kind of bad reading it back. But it feels so good to type it. I am functioning. And it looks like with time (I mean it’s only been a week) I will recovery quite well. And they got it all. Even if a small microscopic amount its left it will take a good 20 years for it to come back. And that sounds amazing.

The drugs they put me on are intense. I am on hydrocdone for the pain, dextromethropham for antiinflamation, prilosix to protect my stomach, and  miralx to keep me from getting stocked up.) I have been eating organic yogurt and it has been making me go famously.) The steroids are tough but really help the most with the pain, I feel. They make me very wiry, jittery, and sore. It’s hard to sleep. Most of the time I am too tired to get up but to anxious to sleep so I just lay there. Its seems to work. I feel rested after.

The hydrocodone puts me more to sleep than anything. It knocks me on the floor.

 Day2

 Day 5

I am getting tired. Here are some pics of my scar. Its incredible how fast its healing.

Fall's end

Fall is soon done here. It was my first real fall (in California our evergreen trees don’t wilt). I thought fall was a series of browns and yellows. I had no idea the spectrum of bright pinks and reds the leaves could change. I had no idea leaves could dance. With each gust the colors and lights refract as they circle around one another.

The brightest tree in the city stood alone behind the methodone clinic; its bright florescent pink leaves so obvious against the pale grey cement walls and chain linked fence. Even on the gloomiest days it appeared to glow.

When I first noticed her, I told everyone. Many smiled politely and some did nothing. It didn’t matter. The happiness her beauty brought me diminished any slight embarrassment my perceivably naive observation merited.

But fall, as I said, is nearly over. And my tree has lost all her leaves.

Only the small feeble branches remain as a faint reminder of a gem that many didn’t bother to notice.

Maybe next year.