Thursday, January 26, 2012

"See you in three months!"

Those were the words of my surgeon in clinic today. Just about a 3 hours round trip drive for an almost 5 minute long appointment. Doesn't bother me though, I'm glad I'm not considered "sick" enough to warrant a lot of attention. I did feel bad though for the two med students who sat in on the appointment where the doctor didn't even do a neuro exam! I do hope they got something more exciting to see today than the healthy 24 year old with an interesting haircut :-) His first words to me today were of course "so who gave you that great haircut?". I think neurosurgeons secretly choose their specialty just so they can get some enjoyment out of coming up with new hair styles...I've seen all kinds during my brain tumor research (although I still have not found anyone who had the same ear to ear incision/front of the head shave that I have).

So in my five minute appointment today I learned that my surgeon is definitely the guy to stick with as far as follow ups go. He is far more optimistic than the other doctors I have met, and more optimistic than the pathologists and the radiologists looking at my slides & MRI's. While those doctors all gave me a time line for regrowth of my tumor (1-3 years according to one doc, 10-30 according to another), or a "worrisome & concerning" report of what they saw (radiology & pathology), when I asked Dr. L if he thought my tumor would regrow he answered with a positive "no". He went on to tell me that he is a very optimistic person, thought he got everything out and doesn't think it will regrow, however if it does, we will catch it early and take care of it but he doesn't want me to stress about it, so I won't. Positive Thinking!

Dr. L doesn't even want my next MRI until April-ish, that's FOUR months out from my surgery. Does that make me a little anxious? Yes, but do I trust him? Also yes. So I've been back to working out, even spin classes, and will be going back to work next week and just getting on with my life, picking up where I left off and I am ready to do so! He did tell me though that we have just gotten on a roller coaster ride together. No two of my MRI's are ever going to look exactly alike, MRI's change based on what angle the pictures were taken at, the quality of the picture, even the tech that took it. He said that we will see changes that look like something growing and changes that look like something shrinking. He said he wouldn't start to get concerned unless there was a significantly large change, a change/growth that is consistent over 3-4 scans or a return of my symptoms or new symptoms. For now I will have MRI's every three months and an appointment with him after each one, he was hopeful though that we would be able to space them out to yearly in 2-3 years so long as everything remains stable. Sounds good to me!

That was the end of my appointment, I will see him again in three months. In the meantime, while there is nothing I can do to make absolutely sure my tumor will never grow back, I am taking some proactive steps. I started reading Anti-Cancer: A New Way of Life. Nope, it's not just for people with cancer, it's for anyone who wants to live a healthier lifestyle and take their own steps towards preventing cancer development because, lets face it, cancer is on the rise and while treatments are getting better (for some) prevention is not. And, more young adults are being diagnosed with cancer than ever before. It is a very interesting book and I am learning a lot. The dietary part of it is what I am focusing on now. There are quite a few of researched/evidenced based studies that have proven certain foods to have cancer fighting properties. From preventing inflammation, stopping new blood vessel growth that feed tumors to actually stopping the division of cancer cells. While I won't say no to french toast at a breakfast out I have started becoming much more aware of what I'm eating and am working on cutting processed foods completely out of my every day diet and focusing more on a primarily "plant based" diet. This is pretty big for my no-cook, no food creation self but I'm about two weeks into it, have made a few successful meals and have avoided most processed foods I used to eat all the time (dark chocolate is still allowed so I get my sweet tooth kick). Anyways, we'll see how it goes, my goal is for it to eventually become routine for me, and for my tumor to stay away of course!

Well there probably won't be too many more long interesting posts for a while, which is fine by me! One more thing, since I drove all the way to Hopkins today for a very short meeting I also decided to pick up my two MRI's I'd had done there. Now I'm not going to post the after surgery MRI's because really, they're not all that different looking from the before ones. The space that was once a well defined mass is now an empty space that has been taken up by blood, swelling is still very obviously present and overall it's not much different, which is to be expected only two days after surgery. The pictures I did want to show you though are those from the "wand" MRI that I had done the morning of my surgery. They used these images to create 3-D pictures of my head/brain/tumor which actually look pretty cool, so here's two of them.

What I would look like bald. Pretty cool - not sure if it's supposed to look like me or not haha.
And the little discs are what I showed you pictures of before, but this time on me (according to the operative notes I read those little green discs and the machine used with them were crucial to the removal of my tumor, so thanks little green stickies!)

And the inside of my head (and tumor), so crazy. There is a whole series of these so you
can rotate the head around and see it from all angles.

 Thanks for reading!
And please spread brain tumor awareness!

Wednesday, January 25, 2012

Thank You!

This post is long overdue and I apologize. The past two months more people than I can count have rallied together to help me get through this experience. I cannot thank people enough for all the prayers, good thoughts, cards, goodies, emails, facebook messages, texts and phone calls. It means so much to me to have so much support from family & friends. I am so lucky for every one of you. While I never imagined myself to be in this situation, it has been made so much easier because of the great support system I have. From my wonderful parents who were able to drop everything and come be with me, to my supervisors at work who told me not to think about it at all, that they would take care of everything - I have been so blessed every step of the way.

There really aren't enough words for me to express how much I appreciate every one of you and everything that has been done for me these past few weeks. All I can say is Thanks! :-)

Sunday, January 22, 2012

Brain Tumor Facts

This post is to share some information I have found out about brain tumors. Prior to this experience I really didn’t know much about them and I believe that unless you have experienced them personally (family, friend, work, self) that most people don’t know anything about brain tumors. Please read this post, learn something new and spread awareness. Thanks!
*please note that the statistics below represent brain tumors as a whole, not necessarily the type of tumor I have been diagnosed with, in any case, the statistics are shocking.

  • There are more than 120 different types of brain tumors, making effective treatment very complicated.
  • Each year over 210,000 people in the United  States are diagnosed with a primary (starts in the brain) or metastatic (spreads to the brain from another place in the body) brain tumor - that’s over 575 people every day.
  • It is estimated that more than 600,000 people in the United States are living with the diagnosis of a primary brain tumor.
  • An estimated 64,530 new cases of primary brain tumors are expected to be diagnosed in 2012. 
  •  Brain tumors are difficult to diagnose; their symptoms often mimic other diseases.
  •  Common symptoms of a brain tumor include headaches, seizures, personality changes, eye weakness, nausea or vomiting, speech disturbances, memory loss.
  • The cause of brain tumors is unknown.
  •  Brain tumors represent only 1% of all cancers
  • Astrocytomas represent 7% of all primary brain tumors.
  • At this time, brain tumor research is underfunded and the public remains unaware of the magnitude of this disease. The cure rate for most brain tumors is significantly lower than that for many other types of cancer.
  •  Because brain tumors are located at the control center for thought, emotion, and movement, their effects on an individual’s physical and cognitive abilities can be devastating.
  • No two brain tumors are alike. Prognosis, or expected outcome, is dependent on several factors including the type of tumor, location, response to treatment, an individual’s age, and overall health status.
  •  Brain tumors are the: the second leading cause of cancer-related deaths in children under age 20 (leukemia is the first) the second leading cause of cancer-related deaths in males ages 20- 39  and the fifth leading cause of cancer-related deaths in females ages 20–39.
  •  The survival from brain tumor at five years is approximately 30%.
  • Only 12% of males diagnosed with a brain tumor and 15% of females survive beyond 5 years (compared with 50% for all cancers)
  • The five-year relative survival rates following diagnosis of a primary malignant brain tumor by age of diagnosis:
  •      Age 0-19 years: 63.1%
    Age 20-44 years: 50.4%
    Age 45-64 years: 14.2%
    Age 65 or older:  4.9%
  •  The estimated five- and ten-year relative survival rates for malignant brain tumors are 28% and 24% respectively. However, there is a large variation in survival estimates between types of brain tumors
  •  The most common type of primary brain tumor, glioblastoma multiforme, is also the most malignant. Average survival, even with aggressive treatment, is less than one year.
  •   More people under 40 die of a brain tumor than from any other cancer.
  •   Brain tumors can be treated by surgery, radiation therapy, stereotactic radiotherapy, chemotherapy or by using these in combination. The most important issue when treating these patients, besides trying to cure them, is to ensure that the quality of life is not compromised.

      The statistics are staggering, while there is research being done it is not enough nor making strides fast enough to affect the thousands living with brain tumors now. The biggest issue with treating brain tumors remains their location. Many are not operable because the side effects would be to great, and they cannot be treated by traditional chemotherapies used to treat many other cancers because of the blood-brain barrier that protects our brain from most harmful toxins. Radiation is another common treatment however with most brain tumors it is a "one-time" shot. Meaning that if it is used and the tumor returns most doctors will not prescribe it again because of the long term effects on surrounding brain tissue. Because of that many people choose the "watch and wait" approach to treatment, waiting to treat until the tumor grows to a point that it may become life threatening or the symptoms are disabling. Currently there is no "cure" for brain tumors, only treatments to keep the tumor "in check" with the goal of prolonging a good quality life. 

      Thank you for reading & please spread awareness!

    American Brain Tumor Association:
    National Brain Tumor Society: 
    World Health Organization:
    National Institute of Health:

Tuesday, January 17, 2012

MRI Pictures & other news

Well, I finally got my own copy of my initial MRI done at Washington Hospital Center. Of the 936 images taken of my brain I have chosen just a few to show you, just the ones where the tumor is most obvious (although it is pretty obvious in most of them). For those of you into this kind of thing...enjoy :-)

View from the front, going in through my forehead

The tumor is in my right frontal lobe, trust me, 
this is just how the MRI's come out

How is it possible to have something that large growing
 inside your body without knowing it?
Obviously I'm not the right person to ask, but it's scary

Notice that "midline shift"? Aka the middle of my brain
is no longer in the middle = not a good thing

Lots of swelling around the site as well

Well that's it. I hope I have impressed you (haha just kidding!). In other news I saw my primary doc this week. Now really, I've only been going to her for a year so it's hard to consider her well versed in my medical history. Of course a brief review of my chart from birth until I moved out here reveals very little medical history as I've been generally healthy.  Anyways, I went to see her just to update her on the past two months, I figured she should be in the know. And the first thing she asks me? Had I gone to see her over the summer for headaches?! Umm, yes, yes I did, not once, but TWICE, for headaches, geesh. Oh well, now she knows and maybe it will help her pay slightly more attention to the next healthy looking 20 something who is complaining of headaches (now i'm not advertising for an MRI every time someone complains of a headache, but even just a little more investigation into the problems instead of saying its just migraines).

I also heard from my radiation doc today. I guess all my docs (surgeon, radiation, oncology) pow-wow'd this week to discuss me. Apparently my surgeon has claimed me for his own for follow-ups. Kind of strange since surgeons rarely do long term follow-ups but from the sound of it they're all bff's anyways and the other doctors will be in the know of me if/when things change. It's even less driving to Baltimore for me at the moment though so I can't complain. It does make me slightly nervous as surgeons are generally harder to get a hold of if there's a problem, and his PA was really hesitant to discuss things with me over the phone the times I've called her but we'll see what he says when I see him next week. 

That's all for now! I am working on my Brain Tumor Facts post and will have it up soon. Hope the new year is treating everyone well, as always, thanks for reading!

Thursday, January 12, 2012

"Unusual Features"

So I have been delaying writing this particular post, for one I was spending my last few days in Massachusetts trying to visit with everyone I hadn't seen yet and just enjoying my time there. Two, I wanted to make sure I fully understood what I was going to write about before spreading the news. This post is about my pathology reports and warning, it might get long. More so because to write it out, for me at least, will help me to understand it better.

I got the results initially a few days before Christmas when I called my surgeons PA (physician's assistant) to see if they were ready. She told me I had a Low Grade Astrocytoma with an estimated 95-98% resection (amount removed during surgery). She explained that "low grade" meant slow growing and that it could have possibly been growing 10-15 years before my skull finally just couldn't accommodate it anymore and I started having symptoms. Because of this she didn't think I would need any further treatments at this time (ie. radiation or chemo) but I would meet with the oncologists for follow up anyways and have frequent MRI's to watch it because it could start growing again.

That doesn't really explain a whole lot but most of my questions were deferred by "well the oncologists can explain it better...". I asked her if it was considered cancerous/malignant or if it was benign but she told me that the WHO (World Health Organization) didn't like to classify brain tumors that way because even a "benign" tumor can result in serious illness, disability and death because the lack of the skulls ability to expand to accommodate it. Also, not all tumors are in an area that can be reached by surgery. So I did do a little research in this area. WHO classifies brain tumors in stages, stage 1-4, 1 being the slowest growing and typically non-invading of surrounding tissue, if surgery can completely remove this tumor it is typically considered cured and rarely grows back. Stage 4 tumors are the most aggressive, fastest growing, invades surrounding tissue and has the ability to spread throughout the brain (primary brain tumors rarely leave the brain, do occasionally spread to the spine). Stage 2&3 fall somewhere in between. Stage 2 are slightly slower growing than grade 3 and look less abnormal under the microscope. Both have the ability to invade surrounding tissue and both can reoccur at a higher grade.

This is the info I've been kind of going on over the past few weeks, I did some research on my own of course, trying to stick with reputable websites like the American Brain Tumor Association, WHO and National Institute of Health. Most of those sites all say the same thing, that a low grade (also known as stage 2 and diffuse) astrocytoma with a good resection rarely needed further treatments until regrowth so that has been encouraging. I have also been lucky that my tumor was/is in an area that is currently not affecting me in any other way like causing seizures, trouble with memory, concentration or speech, or motor difficulties.

Now to today (oh my gosh, the blog is up to present time!). Today I went to Hopkins and met with my oncology team. Basically I will see the surgeon again in a few weeks but it is unlikely that I will see him much after that, surgeons generally do their thing then pass the torch so I need people to continue follow-ups with. I met with two doctors, one is a radiation neuro-oncologist so she specializes in radiation therapy targeted at brain tumors. The other is a medical neuro-oncologist, he specializes in the chemotherapy treatments used against brain tumors. Both were great and able to explain things different ways which helps with the overall understanding of it all.

I saw the radiation-oncologist first. She briefly went over my pathology results with us, the reason my results took so long was that the pathologist was having a difficult time staging my tumor due to multiple "unusual features". It was definitely an astrocytoma and the majority of the tumor was definitively stage 2 however I had some findings that are commonly associated with a grade 3 but I also had a mutation in some of the cells occasionally found in a particular stage 1 tumor (which I won't name because it has 21 letters in its name) AND "rare" features found in stage 4 tumors. Talk about mixing it up! Typically a tumor is staged to the highest grade of cell found, but because there were so few of these higher grade cells found the pathologist described it as having "worrisome features...however the findings are still compatible with an unusual WHO grade 2/3 astrocytoma, insufficient for a higher grade desigination". The radiation oncologist is confident that I do not need radiation at this time but close follow-up with MRI's every three months. She also believes that there is a 60-80% chance that my tumor will regrow but her belief is that it would likely be 10-20 years from now.

The medical oncologist, who I will say is definitely slightly older and more experienced appearing, though I know age does not always equal knowledge, was not quite as optimistic as the other doctor. His belief is that we caught the tumor as it was progressing to a stage 3, that the stage 2 may have been lying dormant for a few years (but not 5-10 like my PA originally said) but over the course of the past few months it started growing more rapidly. He explained that these tumors typically present with a random seizure and that is usually the only symptom. I however had no seizures but sudden onset of first, sporadic migraines that rapidly progressed to chronic severe headaches, vomiting, vision changes and swelling around my right eye. It is his opinion that I also do not need radiation now, or chemo, but he wants my MRI's to be every two months and to him it is not a question of if it will grow and then I will need radiation, it is more of a fact that we watch it until it grows and we will jump on it with radiation right away. Whether its growing again right now or doesn't grow for another 20 years we can't know and we really can't do anything to prevent it from growing when it decides to so I will be a frequent flyer to the Hopkins MRI suites for the rest of my life. At some point I may be able to transition to every 4 or 6 month MRI's but he said it would take a few years of stable (no growth) scans every 2-3 months before he would feel comfortable spacing them out.

So that is where I am at right now. I guess I am going to be "presented" on Monday during their brain tumor conference (held weekly with all of the specialists who are on the brain tumor team) to make sure all the doctors are in complete agreement with that plan and to one more time go over the pathology results. So long as nothing changes there I will see my surgeon in two weeks and after that continue to follow up with only the radiation oncologist after each of my MRI's. The reason I will follow just with her and not the medical oncologist is that when I need radiation I will be going to her, I am not getting, nor is it likely that I will ever need chemo at this point so while the medical doc will stay on my "team" and up to date on my case, I don't have to see him every three months. This is to minimize the amount of appointments I have to get to and travelling back and forth from Hopkins.

So I am all up to date now! My posts may become a bit more spread out as I am not doing much and don't have any more appointments for a few weeks. I will be doing a post in the near future just with some brain tumor FAQ's since prior to this I knew very little about them and unfortunately they are one of the cancers that has made very little progress in the treatment area over the last 10 years & I would like to spread some awareness about them.

Thanks for reading!

The best thing about the future is that it comes one day at a time.

-Abraham Lincoln

Just to prove to those of you who haven't seen me recently, I am up, walking, talking and functioning just fine :-)
New Year's Eve with two of my favorite people. 

Monday, January 9, 2012


The following Thursday I had my appointment with my neurosurgeon, Dr. L. Now I will preface this with saying I did have a list of questions and things I wanted to go over with him related to my MRI's, the tumor, the surgery itself and continuing treatments. However shortly after I got to the neuro clinic I had to find someone to bring my mom to the ER for rising blood sugars that she couldn't get down. She was fine and is ok now, we think maybe one of her insulins went bad but she did buy herself a 2 night stay at the "hotel" as well. So because of this going into this appointment I was a little distracted and didn't quite go over everything I wanted to, but I do have another appointment with him in a few weeks.

Back to my appointment. My first question of course was about the pathology results. Unfortunately they weren't done yet. My surgeon saw this as a good sign since it wasn't immediately obvious that there were abnormalities or rapid cell growth but he told me to call back in a week to see if they were ready then. Next he went over my MRI's with me. I actually hadn't seen my MRI's prior to my surgery but once I got the diagnosis of a brain tumor I really didn't need a picture to prove it to me, it made perfect sense, I could feel it. Anyways when I get the CD's for myself I will try to post pictures of it, but I was fairly impressed with how large the tumor was and how severe the swelling was. The bodies ability to compensate for illness, disease and injury for so long is amazing, and scary. My post-op MRI was from two days after my surgery, therefore there was still evidence of swelling and bleeding as would be expected but it definitely looked better than the before MRI. My surgeon felt confident that he had gotten a majority of the tumor out but we will better be able to see that on my next MRI, and even though he estimates he got most of it out, that only means he got most of what he could see out. He knows that he left some tumor, that was visible to him, intact, there will also be tumor cells that were not visible to him that remain there as well.

Next up on the agenda was to get my staples out, Dr. L thought a good distraction to that would be to continue answering my questions. Well I was able to focus on conversation for about half the staple removal but when he started taking the ones on the top out my newly grown hair was also coming out with them and it hurt a lot more (no pain meds for getting staples out).  During this time though he talked to me a little bit about my surgery. He said it was a lot more difficult than he had been anticipating since part of the tumor had grown around my optic nerve, part was localized in its own mass and some had grown into my brain tissue and was very close to a major artery. He said that the part he had to leave was the part close to the artery. The risk of damaging the artery was too high and it was an artery that provides blood flow to the part of my brain that controls the majority of the left side of my body. Any damage to that artery could have resulted in partial or complete left sided paralysis, massive hemorrhaging or death, it was better left alone. By the end of our conversation my staples were out, it really didn't take that long or hurt that much, only when the hair was being pulled out as well.

The day before I had my staples out, the staples go almost to my left ear as well

A week after my staples came out. 
The rest of the appointment didn't last long. I asked about when I could drive again - when I was off my meds, and of course I asked when I could go back to work. His response to that was that we could "discuss" it at my next appointment, which isn't until January 26th. For the time being I have been doing my best to try and enjoy this extended vacation I have (might as well, I won't be taking any vacations for a long time!).

Luckily my dad was already headed down to us on that day, I spent the rest of the afternoon in the ER with my mom until he got there. My mom was discharged on Saturday and we drove back to Massachusetts that afternoon. I have to say that I am disappointed that it hasn't snowed once since I got here!

Sunday, January 8, 2012


I have to say, knowing what other people go through and have gone through in recovering from surgery - any kind of surgery, makes me feel almost guilty that my recovery time was relatively easy. I have nothing to complain about. In all honesty, besides some fatigue that lingered a week or so, I felt great. For the first time in months I had no headaches whatsoever, no vomiting, no vision changes, no dizziness. It was amazing.

I had to stay in Virginia for about a week and a half in order to have my post-op follow up and get my staples taken out. It was decided my mom would stay with me so on Friday, the day after I got out of the hospital, we took my dad to the airport to go back to Massachusetts. After that my mom and I made the ever necessary Target trip. Being someone whose never cared too much about what other people think of me I didn't mind going out with the staples and the black eye. I was also worried about wearing a hat and having something get caught on a staple...ouch! Most people didn't take too much notice but I did the get second "OMG" glances and the occasional open staring (mostly from kids) but for the most part it only served to remind me how lucky I was to look terrible but be doing so well. I was even able to go out to dinner with friends on Saturday night, only four days after my surgery.

 Friday afternoon, before heading out. 
It took me a long time to get that purple marker off my head, especially since my forehead was so tender. 

The week passed pretty uneventfully. I was tired and usually napped in the afternoon because I wasn't sleeping all that great at night, mostly due to side effects from meds. I was still on keppra & decadron, I was also on an anti-diuretic to decrease fluid build up around my optic nerves. Basically it's a medication that helps the body get rid of extra fluid by making you pee it out. It also causes dry mouth and I am a person who is usually never more than 5 feet away from a water source so between my kidney's working overtime and my excessive thirst I was definitely not sleeping through the night. We also spent a good amount of time indulging on the many sweet, edible gifts sent my way by so many wonderful friends and family and watching Lifetime Christmas movies.

Day before I went to get my staples out. 

I have since been weaned off all the medications I was on before and after surgery. The only lingering side effect I have from surgery is that I can't feel the top of my scalp. There is no sensation there at all, this is because the skin nerves were cut during the surgery and need to heal. Talking to other people who have had similar surgeries it could take years for the feeling to come back or I might never get it back. It's a little strange, especially when brushing/washing my hair but when I think of all the possible neurological deficits that can happen after brain surgery, I'll take not being able to feel my scalp.

I am feeling great now and have finally just about beaten the 3.5 week cold I've had. I am looking forward to getting back to Virginia and easing myself back into the gym and eventually working (when my surgeon says I can of course) and getting to see all my friends back there!

Friday, January 6, 2012

1 Month "Craniversary"!

I would also like to add that today is the 1 month anniversary of my surgery and I am feeling great!
I am almost all caught up with the blog too, only a few more posts to go till then...then what will I do with myself?

Thanks for reading!

(if you didn't see I posted an new entry right before this)

Day 2 & 3 & Discharge!

Later that morning, the day after my surgery, around 8am I think, I was greeted by the physical therapist. Apparently I was first on her list for the day and her goal was to get me out of bed into my chair. Ugh, already? Don’t you know I just had major surgery? I only thought these things; to her I said “If you say so”.  It wasn’t so bad, I was a little shaky, and those hospital beds are not easy to get out of in the first place. As soon as I was settled in the chair the PT was gone. Well now what? My nurse turned up shortly after armed with supplies to get me “taking care of myself”: a basin of warm water, washcloths, a tooth brush and toothpaste. So I went to work, washing my face & brushing my teeth. My right eye I couldn’t get open at all at this point, my head felt heavy with the thick bandages and I was still nauseous. When I was done washing up the tech took my supplies away and I was alone. I don’t know how long I sat in that chair, it felt like forever (it was probably only 20 minutes though, I don’t know) but I was falling asleep while trying to rest my eye on an ice pack, I was afraid I was going to fall asleep and slam my head into the table. I also figured if I was able to I should try to get a nap in before my parents showed up. My nurse was pretty disappointed that I wanted to get back in my bed already but she let me.

Again I have no idea if anyone rounded on me which is frustrating because I would have liked to hear what they had to say (I also don’t think anyone rounded on me on the floor, I guess I am just too used to being involved in rounds). The rest of the morning I stayed in the ICU but nothing exciting happened thankfully. My pain meds were changed over to oxycodone or Tylenol which meant I could drink something but at this point was pretty nervous to do so, so I didn’t drink much, my pain was also significantly improved and I didn’t need a whole lot. My a-line came out, yay!  My parents actually didn’t turn up until almost 12, I guess for the first time in a week they felt able to sleep. They were very surprised by my eye, I guess the night before it hadn't been swollen at all while they were there and I still didn't know what I looked like. Around 1 I was moved back to the neuro floor, I was not as lucky this time to have my own room, which is fine, but my roommate was loud. Finally the last of my "invasive" things was removed...the catheter, ugh, but now I had to get up and walk to the bathroom when I needed to so that got me moving.

I didn't take any pictures while I was in the hospital, didn't really think of it but I can tell you I looked pretty awesome. My right eye was an array of colors and almost completely swollen shut. I still had the purple signature across my forehead and I had thick white bandages going across the front of my head ear to ear...I'm not sure how they stayed on but they did. My hair was also pretty awesome if you can imagine, what was not under the bandages was betadine soaked and crispy, bed headed and in all kinds of knots. Also apparently all the hair that was shaved off wasn't completely removed from my head so every so often chunks of hair would fall off...nice. Not too much went on that day, there was an MRI in the works but it ended up being bumped to the next day. Katie came to visit for a while so my parents were relieved to go eat. My first after surgery meal was also delivered. It was some kind of mystery meatloaf and some sort of vegetable. I tried eating it but could not bring myself to do it. My dad was able to go back to the cafeteria and get me soup and a bagel...much better. 

That night I really didn't sleep much at all. My roommate was either on the phone or watching TV all night long...and when she dozed she snored loudly. My laptop had taken a fall in my parents car and the screen wouldn't work so I couldn't watch anything, the TV's cost $10/day (really!?) plus I couldn't get my glasses on my head to see so that didn't work, and my bandages covered my ears so I couldn't get headphones in to listen to music. Oh well, I survived the night. Hospitals, as we all know, are not well known for being great places to sleep and rest.

The next day (so now we're on to Thursday the 8th) was discharge day! Yay! I was pretty surprised to get to go so soon after a big surgery but I had no complications or any reasons to stay. I was visited around 6am by one of the neurosurgery fellows to take my bandages off and I later got to assess my 50 staples. I had a MRI around 8 (apparently staples won't get sucked into the MRI's magnet, good thing!) and was then reevaluated by both physical therapy and occupational therapy. I will follow up with a visual therapist due to some "mild abnormal" findings on the OT's assessment, but in my defense I think it was an unfair assessment since I had one eye I could barely get open. In any case I have had no vision issues since leaving and won't even see them until February anyways. 

I was actually discharged pretty early at 3:30. We stopped at the hospital pharmacy to get my prescriptions and headed home. So much better to be back on my own couch and in my own bed! My mom took up camp on an air mattress in our living room for the rest of the week while my dad spent his last night there back at the hotel. Besides being tired I was feeling great and had very little pain though I kept taking Tylenol for a few days. I couldn't believe it had all gone by so quickly! 

First night back at my apartment. It's a little grainy because I took it on my cell phone but you can see the overall effect, my black eye, the purple marker and of course the great hair (and any haircut that saves your life is a pretty good haircut I think...expensive, but good :-p ).

Thursday, January 5, 2012

Waking up and then some.

According to my parents they got the call that the surgeons were "closing" around 7pm. So from start to finish that makes for a little over four and half hour long surgery...not too bad, the surgeon had been estimating five to six.

The first time I can remember waking up was in the ICU. I know it was the ICU because I woke up mid transfer from stretcher to bed. I was not intubated and I don't know if I spent time in the PACU/recovery prior to going to the ICU. If I did I don't remember it or remember when or where they extubated me.

It was chaotic, the lights were bright and there were at least six people around me though I can only distinctly remember three of them, but I remember other bodies and voices. I. Was. Mad. I remember my head killing me like someone had just drilled into it...oh, wait, they did. I couldn't talk because my throat hurt and was so dry and scratchy but I was trying to scream "my head!". The anesthesiologist was on my right holding my arms down as I tried to grab my head, a man was on my left trying to get EKG stickers on me and hold me down at the same time. My poor sweet nurse (I'm so sad I can't remember her name) was at my bottom right trying to hold my legs down and probably keep me from kicking her in the stomach. Finally (but it was probably only a second) someone asked me if my head hurt. Duh! I remember nodding my head vigorously, probably not a good thing, but I got something good then and slipped back into unconsciousness.

The next time I woke up it was quiet, the room was dim, I was covered and tucked in neatly. My nurse was on my left, hanging a med. As soon as she saw I was awake she introduced herself to me, told me my surgery had gone really well and that my parents were on their way up to the unit. She did a neuro exam on me, which I got every hour through the night, and asked how my pain was. It was a 7/10 I decided. It was a different kind of headache from pre-surgery, it didn't hurt much inside my head anymore but around my head, my scalp & skull throbbed. She told me I could have Fentanyl every hour if I needed it. Fentanyl was a good thing, for a little while. I was not on a continuous pain med or anything like that, and fentanyl is one of the shorter acting meds, they don't like to let neuro patients get too sedated.

I was kind of in and out of it for a while, I don't know if I ever actually slept. My parents came in, they told me they got there around 8:30 which was only an hour and a half after they got they call that my surgery was almost over, so not a lot of time was passing. I didn't have much of a sense of time. I was able to talk to my parents a little, but mostly dozed. I don't know what time they left but it was before my nurse who was off at 11. I felt bad she had to admit me at the end of her shift (the things only a nurse would think about). Sometime before she left I asked for the one thing I had actually thought about pre-surgery. Before surgery I told myself I wasn't going to ask for water, no matter how dry my mouth and throat were, I wasn't going to do it. But I did. I had been a little more awake and talking to my nurse, she was asking me about where I went to nursing school and where I worked. Well, it was getting harder and harder to talk because my throat was so dry and sore, so I asked for a wet swab. I told myself I wasn't going to swallow the water, just wet my mouth and lips but when she handed me that big old green swab, soaked in ice water, well I sucked it dry. It was the best sip of water I think I'd ever had. The pleasure was short lived though. A minute later I knew I was going to pay for it, luckily there was a basin close by and I threw it back up, and then some. I became very nauseous but got anti-nausea medication around the clock after that (note to self: don't ever forget my kiddo's zofran!). We also discovered, shortly after another dose of fentanyl that the medication was bringing on my nausea and making it worse so that was the end of that great med.

That nurse left at 11 and I don't remember the nurse I had through the night as well. The only conversation I can remember having with her was when I asked when my a-line could come out (ok so maybe I was obsessing over something trivial, I'll try not to be annoyed when parents do that anymore). Here's the other thing about the a-line though that was bugging me. Mine was positional and my wrist had to be facing up for it to work. Try sitting up and sleeping with your wrist facing up, I couldn't do it, or remember to do it and every time I turned my wrist down my monitor alarm would go off and someone would have to come in and tell me to keep my wrist facing up. She was drawing labs off of it at the time when I asked and she said if my labs were ok she could take it out. She must not have gotten the heads up though that I was a nurse because she went on to explain all the benefits of having an a-line and I remember saying "I know, I work in an ICU, I just don't want it". Gosh, I hope I wasn't too obnoxious to her that night! I'd hate to have been "that" patient, ugh.

At some point in the night was also when my right eye started swelling and I had to start my continuous ice pack treatments (I must have used over 50 ice packs during my stay, I hope they don't charge!). My surgeon came in early, it was still dark, per usual. I wasn't really alert enough to ask questions but he did explain to me that a majority of my tumor had been directly behind my right eye and he did a lot of work in that area - hence the swelling & black eye. He told me that he thought he had gotten most of the tumor out but had to leave some because it was too close to a major artery, but he estimated at least a 95% resection. Of course at five am the day after surgery I couldn't really process too much so we'll get to that later.

Wednesday, January 4, 2012


A little before 5am the morning of December 6th my parents and I made our way from Arlington, Virginia to Baltimore, Maryland and to Hopkins. I had a MRI scheduled for 5:45 am. This MRI was called a "wand" MRI. Before the test the tech put green foam stickers on my head. These stickers are able to be used to create a GPS like map of my brain and tumor and were also able to be used during in-surgery CT scans to help the surgeon remove the most tumor tissue possible and do the least damage to healthy brain tissue. Pretty cool technology and amazing I think. Unfortunately I didn't take a picture of the green foam look but I found one online to give you an example of how I spent the rest of the morning walking around the hospital since I wasn't able to take them off.
I didn't have quite that many, but enough.

The next part of the day was the most frustrating I think. If I had to say one bad thing about my experience at Hopkins (besides from the food) it would be the pre-op preparation I got...or didn't get. While I had that "just do it" attitude it still would have been nice to know not only what the surgery would entail and what to expect, but WHERE TO GO! I was never told what to do after the MRI and Hopkins is a BIG place. So we went to the most logical place to us...the inpatient admissions office. There we were told that I needed to go to outpatient admissions...seems weird but apparently that's where people are admitted preop even if staying the night. So that was a 20 minute walk from where we were so we headed off. Guess what? NOT where I was supposed to be. They directed us to the neurosurgery clinic, which was in the same building...but they didn't say it was the clinic, just where we should go. It still wasn't right but at least I was within the right department and someone there was able to make a few phone calls and figure out where I needed to go. Of course this was back in the first building, another twenty minute walk, we got there around 7:30. Luckily we definitely weren't late for anything because we were told I was scheduled for "sometime" that afternoon, but because there was a possibility of one surgery getting canceled they would "prep" me right away. 

"Prepping" consists of being stripped of personal belongings, being given that dreaded blue gown to wear and sitting on a stretcher in the corner of a curtained "room". Oh yes, I did the routine admission questions with the nurse, had an IV put in, labs drawn and fluids started, but then we sat there for the rest of the morning and into the afternoon without a word on my surgery. Three people came and went from the room next to me and I was still there, entertaining myself with DVD's and texts to/from friends and family. My dad on the other hand may have caused some minor trouble pushing buttons just to see what they would do...

At 2 (six and a half hours later), my surgeon showed up to talk with us. This was the longest time I spent talking with him before the surgery. He went over risks/benefits etc., explained to us the use of the intra-operative CT scanner, special neuro-monitoring I would receive in which acupuncture like needles would be inserted at different areas of my body and attached to a computer for specialized monitoring and how he was planning on using a larger incision so that the majority of the scar would eventually be completely hidden under my hair. He apologized for the bad haircut in advance, which I have forgiven him for :-). Then he went over the consent forms and I finally signed myself completely over to him. Now here's the funny part...I signed three forms for consent for surgery, I then had no less than TWELVE forms to sign giving consent for them to use my tumor and blood samples in research. Twelve. That's kind of crazy, I mean, of course you can use it for research...I certainly didn't need it. If it weren't for hundred's of people who had gone before me these treatments wouldn't be available to me now, but I thought there should have been more concern over the surgical consent than the research one. Then he asked me where he was doing surgery...uhh the RIGHT side of my head please (I forgot they do this as a safety check before surgery) and he put his signature in big purple marker right across my right forehead. (I was actually his 5th case for the day but I wondered how many people were marked by that same purple marker every day).

Once he made his appearance things started moving. My OR nurse came in and introduced himself, made sure I was free of anything "extra" (clothes, jewelry, etc) and to see if I had any last minute questions, which for him I didn't. He told me anesthesia (good, the ones I wanted to talk to) would come by and then they would bring me to the OR. So anesthesia came in shortly after, an attending and a fellow. The attending was the first person to tell me she had looked over my history, knew I worked in an ICU and therefore was going to tell me exactly everything they were going to use and I could ask questions if I didn't understand anything. I appreciated that, and it's nice to know that someone had read up on me beforehand. She told me which drugs they would use for induction and throughout the surgery, she also told me it would take about an hour for them to do their thing, since they put patients with increased ICP under very slowly to not cause drastic pressure changes. I really only had one question though. Did I need an a-line?

For my non-nursing friends, the "a" stands for arterial. It is basically an IV that goes into an artery, typically the radial artery in the wrist. It can continually monitor a patients blood pressure and labs can be drawn off it without having to stick the patient. Since I have started working in the ICU, and seen many of these lines placed into patients, I have always said that is one of the things they would have to seriously knock me out for before trying. The reason is because the artery is much deeper than the vein, I have seen way to many doctors "fish" around to get this line in, sometimes for hours. They must extend the wrist back and insert the needle at almost a 45 degree angle...though sometimes it looks like almost 90! It is very painful looking, leaves major bruising and, while less common in adults, can cause serious injury if done improperly (like loss of fingers/hands/arms). I didn't want one.

The anesthesiologist seemed pretty surprised by my question (I guess it's not one she gets asked often). She responded by taking my pulse, and then saying yes, I would need an a-line. Of course I asked why...I wasn't having cardiac surgery and I was expected to be extubated (taken off the breathing machine) right after surgery. She explained they could better monitor my intracranial pressure by having an continuous blood pressure reading. Oh. Ok, I guess that makes long as she promised to knock me out first! She promised. (Though, thanks to the four insertion points and massive bruising I had I suspect her fellow got to practice his a-line skills on me, but at least I was knocked out).

Then, just like that we were off to the OR. I wasn't given any sedatives before going (my aunt, an OR nurse was shocked). Maybe because I seemed so calm? I don't know what their reason was, I wasn't offered any sedation so I didn't realize it was unusual. My parents took my things and were instructed on which waiting room to go to, and then, at about 100 miles per hour, we were off. Why we had to get there in such a hurry I don't know. The OR was in a more of a dungeon looking area of the hospital. The halls were small, crowded with OR equipment not being used and dim. On our way the fellow started asking me about working at Children's and how he had done a residency there and never saw me...umm, really, small talk now? All I could think was that I hope he never goes back to Children's now that he's getting the chance to see me and all my glory, including the inside of my skull.

When I was wheeled into the OR room I was first surprised about how small it was in there, granted there was a lot of equipment. I didn't have time to take it all in but there was the cat scanner, ventilator (anesthesia vents are also MUCH larger than ICU vents), the table I would be on, many many monitors, computer screens and video screens. Besides my nurse there were also at least 6 other people in the room, who barely even looked up as I was wheeled in, hunched over different computers and pieces of equipment. All I could think was wow, there was a lot going on in here for little old me.

The last things I remember are getting onto the OR table. My arms were strapped down out to the sides and my legs together at the bottom. One anesthesiologist gave me a dose of versed, the other put a mask over my face. My last thoughts were that I didn't like the mask, it made it hard to breathe. Then I was out. My life in these strangers hands.

Tuesday, January 3, 2012

The days before surgery.

So I will be completely honest, I was a bad nurse...or bad patient. Maybe not, depending on how you look at it, but I did not look up anything before my surgery. Except for my surgeon, I read everything I could find about him, and he seemed pretty legit to me. But no googling brain tumors, crainiotomys, none of that. In fact the first time I thought about...actually even heard the word "crainiotomy" was when I called my supervisor at work to fill her in and she was the one who asked me if I was having a crainiotomy. I didn't really know how to answer her because I hadn't thought about it...but the answer of course was yes. That was the first and last time I thought about what was actually going to happen until after my surgery. I don't think I was denying it or avoiding it, it was more like "just do it" and be done. Excessive research on google because I don't have access to proper research sources wasn't going to change anything. As a nurse I knew and understood the language they were using, tests they were doing, I had confidence in the people I met and I had a general knowledge of what goes on in major surgery. For me that was enough. I was going to get this thing out of my head and was very happy to be getting rid of it. I was, and am, also extremely lucky to have had a tumor found in a spot that was deemed "easily accessible" by my surgeon and low risk as far as neurological effects. Now I don't think anyone should be "lucky" to have a tumor anywhere, but I understand that the placement of my particular tumor has made for a much better outcome.

That weekend my uncle was awesome enough to fly both my brothers down to DC to visit me so I hung out with them all weekend which also made me less likely to google anything. Luckily they are easily entertained because while the decadron makes it hard to sleep, the keppra made me extra sleepy and after two nights of not sleeping in the hospital, keppra was winning the sleep battle. They got entertained from my couch while I napped on and off. Actually, it was the first time I was present for an entire Carolina Basketball game viewing with Katie & Shannon...though I did sleep through most of it :-). We did go out for a few dinners though, brunch and a general wandering around the area, I just wasn't up for touring the museums and monuments which was fine with them.

They both left Sunday afternoon and I spent Sunday evening and part of Monday "preparing" in what I thought was the appropriate way. I did three weeks worth of laundry, made sure my cats had enough food and clean litter, and I made an attempt at cleaning my room. My surgeon had told me he estimated a 48 hour hospital stay but I knew things could come up and I wanted to make sure those little errands were done. I packed an overnight bag for myself complete with extra sweats and t-shirts, plenty of "Friends" episodes and my laptop. My parents arrived Monday afternoon and we all, with Katie, went out for dinner. We ended the night pretty early (though I think I still got to bed late) because I had to be at Hopkins at 5:45 for a pre-op MRI and it takes about an hour or a little more to get there. My 4am wake up call came way to soon!

Strangely enough, I was not nervous and despite my past history of severe anxiety over trivial things like erg tests and care plans, I had none. I think, for the first time in my life, I accepted that this was something I was not going to be able to control on my own and I was ok with that. I had trust in the hospital I was going to, in the team members I had met and yet to meet. I had more people than I can even imagine or possibly ever thank praying for me and sending good thoughts and vibes my way. I was going to be fine. I had a strong and supportive wind at my back bringing me through this.

If you hold on to the handle, she said, it's easier to maintain the illusion of control. 
But it's more fun if you just let the wind carry you 

- StoryPeople by Brian Andreas

Monday, January 2, 2012

Night 1: Neuro ICU & Night 2: Neuro floor

So, still in the ER, at 10:30 my nurse came to tell me there was a bed ready for me and she had given report to my nurse but per the ER policy any patient going to the ICU had to be transported there with the ICU we had to wait for him. Pretty silly since I'd been walking around all day but policy is policy, I know how it works. At 11:00 one of the NCCU (neuro critical care unit to not confuse it with NICU - neonatal intensive care unit) docs showed up so me, on a stretcher, and my entourage of nurse, doc and dad made our way to the NCCU. The doctor was updating my dad on the plan for this stay as we traveled which caused a bit of a debacle as I was admitted because in the adult world, unlike the children's world, visitors are to wait in the waiting room of ICU's until the nurse say they can come back so the secretary was chasing my dad down the hallway trying to get him out. Oh geez.

I found the whole ICU admission process kind of funny, just because it was so familiar but I myself felt so fine and all this fuss seemed unnecessary. There was my nurse doing all the routine admit stuff, the charge nurse charting, the ICU fellow who had come with me on transport, another nurse to start a 2nd IV on me(because ICU nurses always like to have more than 1 access point) and draw labs, and an RT doing another EKG. Then to make it fun an ICU resident showed up to practice his neuro assessment skills. Ahh yes, welcome to the ICU, lets make it as chaotic as possible. I also had to be "swabbed" and much to my surprise I didn't come back MRSA positive despite all the MRSA babies I've probably held way to close. Yay!

So the party finally ended and I was left with just my nurse. Sadly the only nurse whose name I can actually remember from either of my stays...probably because her name was Erin, but I was also most alert this time around. So she was pretty awesome but did break the news to me that I was going to be tethered down for the night. I was made NPO (nothing by mouth, aka no eating/drinking) "just in case" (just in case what?), so IV fluids were started, then I got the super fancy compression stockings AND SCD's (mechanical compression things, to prevent blood clots by squeezing and releasing your calfs, all night long). I thought that was silly, it was night time, I'm a thrasher when I sleep anyways, and I probably wasn't going to sleep much here, and I don't normally need "compression" at night when I sleep 8 hours, but alrighty. I also had the routine hourly vitals and I think the blood pressure cuffs in ICU's must be amped up compared to the ones in doctors offices because it HURT, a lot, every hour, no wonder our kiddo's scream every time we try to get a blood pressure. Finally Erin broke it to me that they had also ordered neuro checks every hour...great, really wasn't going to sleep at all. Oh, one last thing, apparently my labs had shown a UTI just to add to my problems, so five days of antibiotics for me.

The rest of the night was fine. My dad eventually went to his hotel since we got there past visiting hours anyways. I chatted with my nurse for awhile, about my job and hers, she did eventually have to leave me though for her other "real" ICU patient who actually needed a bit more attention. I catnapped between my hourly neuro checks which involved me reciting my name, birthday, today's date, where I was, getting my pupils checked with a bright flashlight, sticking out my tongue, smiling, frowning, shrugging my shoulders, pulling/pushing my nurse's hands, holding my arms out straight with my eyes closed, touching my nose, lifting both legs and flexing my feet. I could about do it without even waking up by the end of my second admission. At some point in the night I became more of an ICU patient when my nurse told me that my electrolytes were low and I needed both potassium and magnesium boluses...something I do just about every day in the cardiac ICU, but weird that I needed it. I remember being barely awake when she was telling me this and I didn't ask her what my levels had been but I do remember being concerned that I didn't have a central line and asking her how fast she was giving it...which seems kind of funny to me now (and I got them over four hours which is appropriate for a non-central line). It still burned pretty noticeably too.

5AM rolled around and I got my morning chest x-ray. I don't know why actually, and I forgot to ask. Probably likely that a resident somewhere was ordering them for all the other intubated/recently extubated patients, didn't know who I was and added me to the list (I've seen that happen plenty of times). That, or they wanted a pre-op chest xray and figured they'd get it while I was there. I did see my surgeon briefly again that morning (they always come when it's still dark, before you're awake enough to ask questions), he said I was fine to go to the regular neuro-unit but my labs had some definite abnormalities from the aspirin so as long as nothing changed with me he was ok with doing my surgery the next week.

Shift change came around and Awesome Nurse Erin had to go home (all nurses named Erin are awesome by the way), my day nurse was pretty awesome too but of course I can't remember her name. She had just me for the morning since I was going to be first transfer to the floor and she would get the first OR admit later in the day. We pretty much spent the morning chatting until she got the call that my room was ready. I was seen by the ICU nurse practitioner who gave me the all clear to go and the charge nurse from the floor came up to make sure I was "floor" material. Clearly I was, and she was nice enough to tell me they moved some people around to get me a private nice of them! (maybe they felt bad about putting someone who looked so not sick in a room with a sick person, whatever the reason I wasn't about to complain!). I don't even think any of the ICU docs rounded on me that morning, my bed faced a clear glass door with not a very long curtain on it and I was awake after 5, I saw rounds go by but they never stopped by my room. Guess I had been officially signed off on early.

I was on the neuro unit by 11, my ICU nurse was sad to see me go (of course, she would have had the easiest day with me haha). The plan was for me to stay there overnight once more for observation and for the more in depth eye exam, to switch over all my IV meds to oral ones (ok so I can eat now I guess), make sure all went well with that and hopefully be discharged Thursday sometime. As soon as I got to my room I got myself out of that gown and into clean clothes...something about that hospital gown just bugs me, the less I had to be in it the better. I was taken for my eye exam pretty quickly, it was similar to one I had done on Monday, and had to have my eyes dilated again! Third time in three days, it's not a big deal, I just had trouble seeing well for a few hours after each time. The rest of the day was spent sitting, my dad stayed but he is impatient and not a good sitter, but there was nothing else to be done. I was there for observation, the surgeons were all in surgery so we weren't going to talk to one of them and there wasn't really anyone else following me. Nothing big was going to happen, no changes to be made, I entertained myself of course by watching "Friends" and eventually my dad found work to do on his computer.

The night wasn't so bad, I didn't sleep much, which I now know is a side effect of the Decadron (steroid), but I don't sleep well anywhere that isn't my own bed anyways. The next morning we were told that I would be discharged that day. Now when I hear that I think ok, late this afternoon. My dad hears "in an hour". Being a nurse I know how frustrated families get when they are told they will be discharged but it takes hours. It takes hours because a doctor somewhere has to finish rounding on all the patients for the day, write orders for all the patients that need immediate orders, deal with admits and transfers, and when they're done with all that then write out discharge paperwork for all the patients to be discharged, including prescriptions. It is a slow process and unfortunately the nurse is the one stuck in the middle who gets hounded at all day by families. So, while I was very nice to my nurse all day about it, I had to keep reminding my dad that it was not up to the nurse when my discharge would be ready. He did have reason to be concerned because he had a flight to catch and he wanted to drive me home before but again my awesome roommate Katie said she could come get me if it was too late for him to bring me home.

I was discharged somewhere around 4-5, right at the same time Katie got to the hospital so it was perfect timing. My dad left to go back to Massachusetts with plans to come back on Monday with my mom (my surgery was planned for Tuesday of the next week). Finally I was able to break out of there, a quick stop at CVS for all my meds (for my interested nursing friends I was on Decadron q6, diamox q12, keppra q6, protonix daily and bactrim q12...regular old NICU patient right there!) and back to my apartment to SHOWER! Yeah!

Sunday, January 1, 2012

Welcome to Hopkins ER.

So the next morning (Tuesday, Nov 29th)  Katie and I got up, not too early (7ish maybe?) and started the trek to Hopkins. My neurologist had also told me to stop taking all over the counter meds, so I woke up with a headache per usual, but couldn't do anything to get rid of it, so it only intensified through the day. My dad, flying from Massachusetts still managed to get to the ER before us, go figure but we got there around 8:30-9ish. Now for those of you who don't know anything about Baltimore, it's not the nicest city, and while Hopkins is a great and beautiful's ER is also not the nicest. They had a very step-wise triage process too. First I checked in. "Reason for visit?" Umm...I had an MRI yesterday that showed a brain tumor. Blank stare. "Why did you get the MRI?" I was having headaches. So headaches became my "chief complaint" and reason for visit...great, that's urgent sounding. It was going to be a long day.

After checking in I waited in the first waiting area for the one and only triage nurse. The one good thing about inner city hospitals though is that there is always great people watching. We did a lot of that today. When I went to see the triage nurse she did the routine vitals and questioning. I handed her my "note" and apologized because I knew this wasn't the kosher way to do things. She agreed with me, told me it would be a long day but that I would likely eventually see who I needed to. I got my note back and was promoted to a second waiting room. First I was called there to complete insurance registration, then more waiting. At this point I got a phone call from Dr. K...just checking to see how I was doing and what I had decided to do. I assured him that I was at Hopkins ER, getting the ball rolling. He has proceeded to check up on me ever since, which I don't mind at all.

An hour or so later I was called back to a room where I met with the ER resident...ahh residents. She was very nice though and while she also agreed that this wasn't the best way to do things she assured me that she would do her best to get the neurosurgery team involved as soon as possible, though it could be a few hours until I saw anyone. She took my MRI and note and sent me off to the third waiting room, the "real" waiting room I guess, with a fish tank, ahh exciting. This waiting room was much more crowded, coughing, sneezing, all kinds of problems. I only added to the fun by starting to throw up, I hadn't eaten anything all morning because of my headache, and had already thrown up once on the ride in (luckily while we were stopped for gas)...but throwing up in the waiting room doesn't get you in any faster either.

At some point I was brought back again and this time met with a neurosurgery resident (the baby neurosurgeon as I called him). He had reviewed my MRI but the attending still needed to see it, and they were having it read by radiology as well. But he was in agreement that there was a large "something" that shouldn't have been there and I did in fact have significant swelling. At this point he also mentioned the possibility of it being an infection and they would run labs for that. But I doubted it, wouldn't I be a lot sicker if I had such a large infection in my head? Maybe not if it had created an abscess but who knows. He told me that I would go have labs drawn and they would start me on steroids (to decrease swelling) and anti-seizure meds (as a precaution). He also said that he was having their neuro-ophthalmology team evaluate me as well. So I left him, had my labs drawn and an EKG done but was sent back to the waiting room without getting any medications.

That afternoon I saw the ophthalmologist and went through the same gamut of testing I'd done the day before. She then told me I had Stage 4 papilledema (out of 5 stages) and she was nice enough to show me images of what that looks like. However I don't really know what an optic nerve is supposed to look like so while it was interesting, it didn't really mean much to me except that I was a 4 out of 5 so it was obviously pretty decent swelling. She told me that if I was admitted she would have me go to their eye institute for a more in depth exam than she could do in the ER. And then it was back to the waiting room...but now with my eyes dilated, great. It was late afternoon by then. Now I understand better why families who come up from the ER are always so drained, frustrated and angry. It is a slow process.

Finally around 8:30ish I was "officially" taken back to the treatment area. I was given a stretcher in the hallway with a wonderful view of the entrance and I was "made" into a patient by being handed the dreaded blue hospital gown. Of course now, 12 hours after arriving, everything turns into a sudden emergency. My nurse was very nice but needed to immediately start an IV for my steroids, apparently she couldn't get them in fast enough. I will give her major props though for being the only nurse to start an IV on me during both my stays that didn't leave a bruise for weeks...and I have great veins! I don't get it. First I got my steroid (dexamethasone), she started explaining why I was getting it, but I did cut her off and tell her I was a nurse and gave dex quite frequently actually. Not to make her nervous or anything, I just didn't feel like learning about dex at that moment haha. Keppra was next, to prevent seizures (had I not gone to the doctor when I did, seizures probably would have been my next symptom, I'm glad I never had to experience that).

At this point we knew I was being admitted, and it was getting pretty late so my dad walked Katie to her car (such a trooper for sitting around with me doing nothing all day) and got the rest of my stuff from her car. Of course this is when the neurosurgeon comes to talk to me. He was very nice, young for a surgeon I thought, but he seemed very calm and confident...but also a little blunt. He introduced himself, Dr. L, and told me he definitely thought I had a tumor, not an infection and it appeared to be about 5-6cm, a little bigger than a golf ball. It was taking up too much space in my brain, the right frontal lobe in particular, and causing extreme swelling which was putting pressure on my optic nerves and causing those to also swell. Then he told me I would need to have surgery to have the tumor removed, and while there are risks with any surgery, if I chose not to do surgery the tumor would definitely kill me. Well that's laying it all out there for you, what choice is there at that point? So, same as the day before, I guess I didn't react a whole lot to this news, and I couldn't think of any questions, just let him do what he had to do. He also told me that since I had been taking Excedrin, which has aspirin in it, that so long as I remained "stable" (ugh that word again) he would wait a week to do the surgery because of the increased risks of bleeding while being on aspirin. But I would be admitted for a few days for observation and to start my meds, and he wanted me in the neuro ICU for my first night. Seriously? I thought, the ICU? I thought he was overreacting a little bit but that's fine. Better to overreact than under.

Since I was going to be admitted to the ICU I got upgraded to a nice curtained "room" in the ER so I could be put on the monitor. What the point of that was I don't really know because all the alarms were off. My sweet nurse also brought me a boxed lunch since I hadn't eaten all day but was surprisingly feeling so much better after the steroids. I couldn't believe how quickly they worked. Also, another weird thing, I could taste and smell all of the saline flushes of my IV...I wonder how many people/kids have that sensation, it's really strange, and it was only the saline flushes, nothing else. But anyways, again we waited, now for an ICU bed.

Till next time! These get too long!

Back to Dr. K's office

So after my day in the life of a preemie (MRI's, eye exams, venipunctures etc.) I got back to Dr. K's office somewhere around 7 (I'd had to wait a while to get a CD copy of my MRI). The waiting room was dark, everyone else having gone home, and it was just him in his office finishing up some phone calls and paper work, and waiting for me. He was calm but I noticed his hands shook a little when he took a sip of water, and he seemed much more tense and tired than he had that morning. He didn't waste much time in getting to the point. "I asked you to come back here tonight because the radiologist was going to send you to the ER without telling you why and you were going to have to hear this news from people you'd never met before. I preferred to be the one to tell you. You have a large tumor in your right frontal lobe, and significant cerebral edema." Significant cerebral edema...was all I could think about. I thought of cooling babies, children after prolonged cardiac arrest, seizures, brain death, herniation; well at least I wasn't imagining these headaches, was my next thought. The only response I could manage to say was "OK". I was too tired to let it in, to really think about it, all I could think about was getting in my bed. I'm sure he thought there was something seriously wrong with me and my lack of a real reaction to this news. "Do you understand what I'm telling you?" Yes, yes I did. "What questions do you have?" Only one, is it treatable? "Treatable? Yes, definitely...but I can't say it's curable." Ok, fine, we'll deal with that when we have to.

He went on to tell me that he also wanted to talk with me because he did not recommend I go to any DC hospitals. His suggestions were to get to Duke, Hopkins or Columbia, and to get there by tomorrow morning. I asked about Massachusetts hospitals and while he believed there would definitely be someone excellent to see in Boston he didn't know any of the hospitals or doctors there well enough to make a recommendation. He also said if I chose to go to Boston I would need to be on a flight there first thing in the morning. I asked if I could go home, have a chance to talk to my parents, and to sleep in my own bed. He said that was fine since I had been stable up to that point..."stable" a strange word for an ICU nurse to hear describing herself, was I at risk for becoming "unstable"?

The only unfortunate thing I would have to say about him was that for whatever reason he didn't think he could directly refer me to anyone, especially since we did not have an official radiology reading of my MRI, since it was done so late in the day. Therefore he simply wrote a note briefly explaining the "highlights" of my MRI and that I needed to be admitted to a neurosurgery team as soon as possible. He told me to take that, along with my CD of images, to the ER of the hospital I chose...and the ER is never the fastest way into a hospital.

He seemed pretty nervous about letting me leave on my own, asking if I needed to call for a ride but I assured him I would be fine, I wouldn't fall asleep or drive myself off a bridge. I really just wanted to get home, shower and sleep...everything else could be worried about later. He gave me a big bear hug before I left, he was obviously genuinely concerned about me which I did, and do appreciate, definitely one of the best doctors I have met thus far in my life.

So I left, really too tired to take in the events of the day. I called a few friends on the drive home...which maybe I shouldn't have because I scared the living daylights out of them, but I didn't want to keep secrets and I didn't know how the next few days were going to unfold, so I felt the sooner I told them the better.

I called my parents when I got home. Definitely not a fun phone call to make. We decided I would go to Hopkins the next day, it was closest and ranked number 1 in neurology/neurosurgery (if US World & News rankings stand for a lot), my neurologist had also said there was little difference in the three hospitals he recommended and he would have no problems sending his own kids there if they were in the same situation. So Hopkins it was, my amazingly awesome roommate was able to get the day off work to drive me up there and my dad decided he would fly into Baltimore the next morning and meet us there. After we had worked that out I did what I'd been waiting to do all day. Showered and went to bed, and despite the day I'd just had, and the news I got, I still crashed hard.