Stanford doesn't matter

Let me explain the title. This post was supposed to talk about my hospitalization at Stanford. Well, I have been hospitalized so many times since, and had many trips to the ER, that this hospitalization seems so insignificant to me. However, I will give you a brief synopsis of that trip.

One day my mom brought me breakfast and I sat down to eat it. While I was eating I noticed I felt out of breath so I took my heart rate with my iphone (really great heart rate app by azumio that's free and very accurate, I compared it with the hospital machines). My heart rate was 150. I went and laid down, but could only get my heart rate down to 130-125ish so my mom called my neurosurgeon's nurse practitioner and she had us call 911 for an ambulance, because she thought I was experiencing a pulmonary embolism, or a blood clot in my lungs. The EMT's did a EKG in my apartment and then transported me to Stanford hospital. They placed an IV while in the ambulance and it was quite painless. Once at stanford I was put in a room with three other patients, the room had curtain dividers for privacy, and doctors saw me all night. At one point in the middle of the night we heard the ER nurses mention they had a patient, middle aged male, that was picked up off the side of the road. That middle aged male began to howl, growl, bark, scream, and bang on the walls. I was pretty sure I was in an episode of Untold Stories from the ER. They finally admitted me to the actual hospital from the emergency room around 4 or 5 in the morning, where they told me all they could figure out was I was severely dehydrated. After 8 bags of fluid and my heart rate returning to normal I was sent home. That was the worst hospital stay. I got no rest and felt terrible. Since then I've had two hospital stays, and three trips to the ER. This was March 5th-6th.

Me all hooked up at Stanford. I think this is the Instagram version...or I have jaundice. One of the two.

I know I have a lot of catching up to do. I've been neglecting this blog, because I've felt so terrible.

March 7th I had an appointment with my surgeon and they removed the sutures and stopped my steroids. 

Before

After

Ew I know that scab looks nasty. Well, anyway that was a Thursday and on Saturday my mom flew home to Oklahoma.

Monday I was home alone and in the afternoon I decided to microwave a snack. I took out what I wanted and realized "Hey, I can't read the directions". My vision had gone blurry. In a panic I called the nurse practitioner and she told me to start my steroids again. Yay. Tuesday morning she called and I informed her that my vision was the same. She told me to head to the UCSF ER.

In the ER I was told that the doctors were concerned the pressure in my head was elevated. I was seen by an opthamologist who said my optic disks looked slightly blurry, which meant the pressure in my head might be slightly elevated. They did a lumbar puncture, which was completely painless, and the results showed my pressure was slightly elevated but not enough to cause damage. They did a CT scan and an MRI and found no reason why the pressure in my head would rise. Technically my pressure was marginally within normal limits (it should be a 10-15 and mine read a 26...seems pretty high to me, but hey I'm not a doctor), but for some reason I was experiencing symptoms associated with hydrocephalus (the fancy term). I was experiencing blurry vision, nausea, dizziness, and pain. I should not have been experiencing the amount of head pain I was experiencing this far out of surgery.

Side note: When they were telling me they needed to do a lumbar puncture I explained my last one was extremely painful, so much so I almost passed out. My doctor seemed confused. I told them how they had my lie flat on my stomach on a table. My doctor freaked out. "Lie flat on your stomach!? Are you sure you got an LP!? That sounds terrible!" So apparently my first LP was done incorrectly....

I was admitted to the hospital pretty quickly. They decided to put a lumbar drain in me. A lumbar drain is a catheter inserted into your spine via a needle that drains the excess spinal fluid. Here's some pictures, nothing too heinous I promise.

That tiny white tube is in my spine! I'm sure you notice the many red dots. That's called a steroid rash. One of the many benefits of steroids. I have that all over my back, my chest, in my hair, and a bit on my forehead. It's awful. I hate steroids.

That white tube connects to these tubes, which were taped to my belly.

And finally, those tubes connect to this drain. Yes, that bag contains my cerebral spinal fluid. When the drain was on I could not change the head of my bed or get up without first calling for a nurse to clamp the drain off. If I were to do that without clamping it, I would get a spinal headache, which is a severe headache from the pressure in your CSF decreasing.

I had that lumbar drain for a about 3-4 days. Amazingly I felt great with that drain. I was hardly nauseous, my vision almost returned to normal (just slightly blurry), and the pain in my head was almost non existent. During the drain the only time I called for pain medicine was for my back, because having a lumbar puncture and a lumbar drain so close together in the exact same location really messes with the muscles in your back.

The only problem was I kept springing leaks. They would clamp the drain and I would get up to eat or use the restroom and my spinal fluid would start leaking from the hole in my back. Not good. This caused me to have severe spinal headaches a few times. After a while the leaks didn't cause me any trouble, but it's generally not good to have your back leak. They had to put a stitch in my back to close the hole tighter around the drain. I still leaked regardless.

The only thing that hurt from all of these procedures is the lidocaine! That needle feels like a knife slowly going into your spine. It's awful.

Before taking the drain out they clamp it off to see how you do. Within a day my vision was back to full blurry, my pain was back, and I was regularly needing nausea medicine.

Then they took the drain out anyway and stitched up my back. I ended up getting a horrible rash around the stitch and I'd show you a picture, but I'm pretty sure most of you would faint. It's not that bad...

The doctors were still undecided. They weren't completely sure if the pressure in my head was elevated or if it was just migraines or if it was something else. They needed to make a decision and be sure. If it was high pressure it could mean me getting another surgery for a permanent shunt.

They drill a hole in your head and insert a catheter into a ventricle. There is a small device connected to that catheter that regulates the shunt that is placed under the skin, which is connected to tubing that goes down through your neck into your abdomen. It basically removes excess fluid and puts it in your abdomen where your body absorbs it. 

I was having a really hard time effectively communicating to the doctors and I was starting to fear they didn't believe me. Ethan, my boyfriend, believed me and he knew I was struggling. After a frustrating visit with my neurosurgeon (frustrating because I couldn't get my point across), Ethan suggested he and I work together to type up a list of my symptoms and type up how they changed with the drain. He also suggested we type up a list of my concerns. He later added a timeline of events (including surgery, procedures, and medications and when these medications were added or stopped). I truly believe without this the doctors would still be confused. We gave this list to the neurologists working on me, my neurosurgeon, and my nurse practitioner.

I would have gone crazy during that hospitalization if it were not for him.

Finally, my doctors came to a conclusion. They decided this was all a reaction to my steroids. Sometimes certain people, when taken off steroids, will experience a rebound effect where the pressure in their head increases. Instead of going with the surgery they put me on a diuretic in hopes that that would help. They will reevaluate at an appointment next week. I'm a little worried, because my vision has not improved, but according to an opthamologist seen during another hospitalization my optic disks look completely normal and he thinks the pressure in my head is normal. I'm still confused...

After 8 nights, and 9 days I was finally sent home on a Wednesday. My mom had flown in Tuesday, because we were almost certain I was getting another surgery.

I wrote the nurses at UCSF a thank you card. I loved all of my nurses. They took great care of me even when I was uncontrollably sobbing from being so tired of the hospital and IV's. At this moment in time over the last 5 weeks or so I've had 13 IVs. After a while it gets hard to find veins and they become very painful. Not only were the UCSF nurses great for medical care they were all great emotional supports too and really helped me through this tough time.

During this hospitalization I learned a lot about what it means to be a patient. I have always been the one caring for the patient. I give bed baths, take people to the restroom, help them get dressed, and help them get stronger. This time I was the patient. I experienced my first bed bath during this hospitalization. It's embarrassing at first but once you get that warm wash cloth on you and you smell the clean soap, all that embarrassment goes away. I know what it's like to not ever want to get out of bed, and just have no motivation at all. With my drain, and with being labeled a fall risk due to my medication, I know what it's like to have to call for help every time you want to do something. I know what it's like to be walked to the restroom. I even know what it's like to cheat and not call for help and just get out of bed anyway, because it will only take a second and I'm sick of pushing that damn nurse's button and waiting! Now whenever I get to work as an OT I will be able to look at my patients and honestly say "I get it. I've been there."Telling myself that, "this will make me a better OT" is what got me through some of those really painful procedures.

And on that note, here are some extra pictures! Yay!

Ear plugs are essential when recovering from brain surgery.
Sound only makes the pain worse.

I got bored a lot.

Fall risk!

Ethan photoshopped in some extra signs. You
may have to zoom in to see them. 

I just had brain surgery...what's your excuse?

Hey everybody! I know it's been forever since I've written something, but I have been so exhausted and weak I couldn't even think of anything to write. This post is going to focus on the actual surgery and my first stay in the hospital (yes I've had two hospital visits, but I'll tell you about the second one some other time)

So I had my surgery February 20th. We had to be at the hospital at 6:30 in the morning and surgery was at 8 am.

Me waiting in the pre-op area

It was a six hour surgery! And two of those hours was spent prepping me. I had two IV's (one in my hand and one in my foot) an IV in my wrist that measured my blood pressure and a central line in my neck. They had to shave my hair (luckily I read online to wear your hair in double french braids, which meant they didn't have to shave more than they needed). They also had to screw my head into a halo, because I was sitting up during surgery. I was left with some pretty nasty goose eggs on my head from that.

The last thing I remember before succumbing to anesthesia was my surgeon waving to me and them strapping my legs to a table. The next thing was waking up in the neuro ICU nauseous and asking the nurses to put a wet towel over my eyes.

I was so sick that first night. They brought me dinner (spaghetti, who the hell wants to eat spaghetti after brain surgery) and I refused. I asked for jello and ginger ale, but I ended up throwing that up for the rest of the night.

I had the best nurses in the ICU. First I had Oliver who I confided in and told him my fear of waking up to the zombie apocalypse after surgery like in the Walking Dead. He understood, he watches the show. Then I had Alex who I asked non stop what time it was, because I was eager to see my parents and boyfriend and find out if I passed my boards. Then I had Merriam who made sure I was completely ready when they transferred me to the main hospital, and also informed me that my hiccups were a side effect of brain surgery (who knew!). They were all so kind and patient and I was really well cared for. I had great nurses in the main hospital, on the neuro unit, as well.

By the way on my second day in the ICU I found out I passed my OT boards! It was a great day...until they transferred me.

For some reason they put me in a shared room, and my roommate was AWFUL. She was an older lady who was extremely loud, had tons of visitors, had the loudest nurse ever, and had her TV constantly blaring. We had the nurse ask her to turn her TV down because I was extremely sensitive to sound, and it caused me extreme pain. She said, "No. I don't see how that benefits me. It's my last night in the hospital." Ugh. When my heart rate spiked to 120 they finally moved me to a private room and I was able to rest.

I was in the hospital for four days. They tried to send me home after three days, but I was terrified. My pain wasn't under control without IV meds, and my blood pressure had been 96/57 the night before. My nurse, William, advocated for me and they let me stay another night. William was awesome. You could tell he really cared and I appreciated everything he did for me.

They sent me home on a Sunday. I was miserable at home and in tears. I wanted so badly to go back to the hospital, because I was comfortable and felt safe there. I'm not unsafe at home, I just worry a lot.

I'm just gonna add on here a little note about the tumor. Most of this info we found out later, but I don't want to keep you worrying. So they got all of Timmy except a very miniscule portion that was attached to a major vein. My surgeon cauterized it so it's dead. I got the final pathology report on Thursday and it is benign! There are some confusing parts though. It is possible, although very very very unlikely, that down the road it could come back and it could come back malignant. My tumor is such a rare one there isn't much known. However, because of the extremely small chances there is no reason to worry about that. I will however have to get regular MRI's for at least five years.

Now for some pictures! Some of them are a bit gruesome so if you are squeamish, don't say I didn't warn you.

This is the first picture I took of myself the day after surgery. I look so pale!

This is what I looked like right after surgery. Got my towel over my eyes and my SCD's on my legs.

I think this was the day of surgery too. My mom got me that dog. I'm still sleeping with it.

That is the central line that was in my neck! Ahh!

Still looking so pale.

That dressing wasn't really doing its job.

Still to this day we have no idea what caused that red spot. I think they scraped my head while moving me.

My doggy

Trying to look nice.

Clumps of hair kept falling out.

We nicknamed that spot the strawberry.

Right before going home. That smile didn't last long.

Hardcore pigtails

Wanna see Timmy?

I realized I never posted the pictures of my original MRI. So here are a few snapshots of what Timmy looks like.

Timmy is that bright white spot with lines by it

Well there he is. I must say my drawing are quite accurate.

Alyssa

Doctor's Appointment

Today I had my first appointment with my new neurosurgeon, Dr. Andrew Parsa, at UCSF. First of all the office is BEAUTIFUL with an amazing view of the city (I know this has nothing to do with its ability to care for my brain, but it was a plus).

This was the entrance to the office. I did not know that I was going somewhere specifically for brain tumors. There were more people in the waiting room than I expected, which made me think "How often do brain tumors occur?" Well, apparently they aren't as rare of a diagnosis as I had thought.

This is the view from the waiting room. It's a great view of Golden Gate bridge and the city. 

The entire staff was super friendly and took their time to talk to me and make sure I was comfortable and had all of my questions answered. We especially liked the nurse practitioner who was thorough, knowledgeable, and friendly.

Anyway to the point. We met with my neurosurgeon and he had what I consider to be good news. So he said that he is pretty certain (90% sure) that the tumor I have is called a pineocytoma, which is a benign slowly growing tumor that can be cured by surgically removing it. Great news my doctor specializes in removing brain tumors and removes these types around 5-10 times a year. Now the doctor said there is a small chance (obviously 10%) that it is something else and there are two ways to find that out. First we are going to do a more in depth MRI the week before surgery to make sure it's still there, looks the same, and doesn't appear to be a cyst. Then after they remove it they will run tests to see if it is malignant and if it is we will figure out what to do from there. 

We are planning on having the surgery mid-late February. The surgery will consist of me sitting up (asleep) and the neurosurgeon removing part of my skull in the back of my head to access the third ventricle (or the fourth I can't remember) which will lead them to Timmy. 

ventricles

AND THEN THEY SHALL CUT HIM OUT WITH THE VENGEANCE OF A THOUSAND FIRES!!!

The neurosurgeon said I will be immediately transferred to the ICU and then after a night there I will spend around 3 nights in the hospital. The whole recovery time should be about a month total and after that I will be back to myself!

Which means....I may not have to wait as long to be an OT as I had previously thought! 

The neurosurgeon seemed really awesome and told me I need to make sure I de-stress and focus on preparing for my registration exam.

So good news? Yeah it's major surgery, but it's not months of radiation, possible radiation related side affects, and delaying my chance of my dream job. I'm calling it good news.

Alyssa

Transitioning

So it's been a while since I have posted, but everything is more of the same. Timmy is still here and I am transitioning to my life in San Francisco where I will be seeing my new neurosurgeon on the 10th. So here is a recap of what's been going on:

• I finished my internship in Austin (and passed!) then promptly gradumacated. One of my internship supervisors told me he was impressed at how well I handled my medical stress along with the stress of being a student in an internship. That made me feel proud of myself that I was able to finish and do something most people would not have been able to emotionally handle. 

• I got to see my dog again and had a splendid Christmas with family 

• I began and finished a road trip with my boyfriend from Tulsa, Oklahoma to my new home in Mountain View, California. 

I am very happy to be back in the San Francisco area, and things have seemed to become a bit easier. I'm not as angry and bitter about Timmy the Tumor, although I still harbor some resentment. I do forget  about it sometimes until I have a conversation with someone about my future plans. I've gotten used to telling people that I have not found a job and I don't know when I will take my occupational therapy registration test because I have to wait until the doctor tells us what the plan is. I've accepted that the next few months are going to suck, but hey I live in a beautiful area with a great support system. 

Graduation was hard for me. It started off emotional when I saw my grandparents and my grandfather teared up when he talked to me. I had a breakdown in the parking lot after that and freaked my dad out. It was hard to see my grandfather, who has enough health issues of his own to worry about, be so emotionally affected by my health issues. Graduation itself was just awkward. I had no idea who knew about my situation and who didn't so when people said "Hey how is everything?" I didn't know if they meant tumor stuff or just generally "Hey what's up?". It went by too quickly too. I didn't get to catch up hardly with anyone, because the large graduation crowd seemed to separate everyone. I did have some good touching encounters with classmates that made me feel loved and cared for. 

One thing I've realized through all of this is I really miss my maternal grandfather. He had three different types of cancer and numerous other medical conditions and handled it all with strength, optimism, and courage. I had mentioned to him before, and spoke about it again at his funeral, that he was a mentor to me and taught me how to be truly strong. I'd like to have him here with me now. He would make an awesome guide through all of this. 

Right now I am sitting on the couch next to my amazing, supportive, loving, etc., etc., etc. boyfriend who takes the absolute best care of me and I'm tearing up from typing about my grandfather. I don't want to be too much of an emotional cry baby. I cried so much on the road trip. Transitions are hard for me.  That's ok this post is long enough.

Alyssa

Introducing Timmy

My name is Alyssa and I have a brain tumor at the base of my pineal gland.

In October I saw a doctor about an old shoulder injury and they decided it was just a stretched nerve and they gave me a pain relief medication.

Well a few days later I was driving to my internship at a rehab hospital (which I am four days away from finishing) and the right side of my face went numb. I assumed it was either due to the medication or another nerve injury. A nurse at work checked to make sure I wasn't having a stroke and I wasn't, but when i told my doctor she sent me to the emergency room. The doctors there couldn't find an explanation and my original doctor decided to go ahead and have an MRI of my head done just in case.

I had the MRI on a Monday and went to get the results on a Wednesday. I waited in the office for quite sometime until a tech came in and handed me the results and told me to look over them and think of any questions while I waited for the doctor. I glanced down and my eyes fell upon the worst phrase I could imagine, "a mass like lesion at the base of the pineal gland". I have heard the phrase, "my life flashed before my eyes" a million times, and at that moment I experienced it. My childhood, college, my family, meeting my boyfriend, my dog Andy, everything just hit me and I burst into tears.

It's been four weeks since that moment and I have had an appointment with a neurosurgeon who explained that there was a higher than average chance that it was something malignant rather than benign, and either way I will most likely need radiation. I had a lumbar puncture (which was the worst imaginable pain) which came back negative for germinoma markers, which by the way means NOTHING, because it can still be cancer and the only way they can figure that out is by drilling a hole in my head. Please don't say congratulations on the negative results it means nothing to me.

At this point I am waiting to move to San Francisco to be with my boyfriend (which was a plan before this whole mess) where I will be seeing a neurosurgeon at UCSF to plan my biopsy. Lately I have been so angry. I was planning on graduating this Saturday, studying for my registration exam, passing that test, and getting a full time dream job as an occupational therapist. Nope not anymore! For a while it looked like I wouldn't be able to take the test in time, now that thankfully looks like a possibility. However starting a new job is looking dimmer and dimmer. I'm watching all of my OT friends get interviews and be excited about their new career and all I can think is when they start I will probably be starting radiation.

I know I know I'm totally throwing myself a pity party, but at this moment I am so angry and so upset with everything I can't help it.

I named my tumor timmy, and I freaking hate him more than anything. He ruined what I was looking forward to the most, being a full time occupational therapist.

I hate you Timmy.

Screw you