Thursday, December 6, 2012

One Year Tumor Free!

Today is one year since surgery to remove my brain tumor. I got the chance yesterday to talk with the neurologist who originally diagnosed my tumor. He seemed very happy, and a little surprised, to hear that one year later I am on no meds, having no symptoms and completely back to my normal life. It is truly wonderful and I am so lucky to have done so well. This past year my eyes have been opened to the world of brain tumors. I of course knew about them, working in the medical field, but I didn't know about them. The majority of brain tumor fighters stories do not have the same trajectory as mine does. I hope my story can end like this. The reality is that we don't know how it will continue or what the future will hold. Years of research are what made my surgery a possibility a year ago and further research is needed. There is currently NO cure for brain tumors. Complete surgical resections are the closest thing to a cure for some brain tumors but certainly not the majority of them, and even complete resections do not guarantee that the tumor will not regrow in a year, five, or twenty. Once recurring, traditional treatments are used which can include further surgery, radiation and chemo but many of these treatment protocols have not changed in years and no new treatments have been developed.

This December the National Brain Tumor Society is running a matching gift challenge, every dollar donated until December 31st will be matched, up to $60,000. Any small contribution can help so even if you only have five dollars to spare please consider making a donation. You can do so here: Donate.

Today I will be celebrating my "one year" at work with my babies...I didn't really plan that out well but I am extremely glad that I am still able to do the work I love.

I am still being followed closely with MRI's every three months, my next one being sometime in January. Until then, enjoying the holidays and I hope everyone else is too!


Wednesday, November 28, 2012

You have a brain tumor...

One year ago today I heard those five words. I can remember it like it was yesterday, I suppose you don't forget things like that too quickly. I still remember not feeling too shocked, I was so tired, and just glad that I didn't have to feel like I was making a big deal out of headaches. The days that followed were a bit of a whirlwind. Ten hours in an inner city ER, an intensive care unit stay, a couple days just lounging around waiting for surgery. One thing I'm glad for is the meds I was on made me too tired to think of looking up brain tumors, or even looking at the MRI images I had. Doing either of those things likely would have put me into panic mode prior to surgery and I am not a panic-er, nothing good ever comes of it (ok, I was a bit of a stresser in college...and nothing good came of it so I don't do that anymore!).

All I can really say about the experience though is that this Thanksgiving I was especially thankful for having found Dr. Kurzrok a year ago and that he listened and took my concerns seriously. Had I not found him I may have had a very different story to tell, if I were here to tell it at all.

I hope you all had a wonderful Thanksgiving! I certainly did, at home for the first time in years!

Sunday, October 14, 2012

Three Month Report

Really that should say 10 month report, since it's 10 months since my surgery last December.

So I had MRI #6 about a week and a half ago. Since the last time I was there they now mandate all patients to wear a gown & pj pants. UGH! Have I mentioned before how much I hate hospital gowns? Anyways, my MRI continues to be stable, nothing major to report. Happy news over here :-)

I had figured by this time my surgeon would have been kicking me to every 6 month MRI's (actually I thought that last time too) but no, I go again in three months. Which is fine, better to catch something early if it were to happen than to catch it when it's getting big. The trips up there have been getting more frustrating though. Both this time and last time we had over an hour and a half wait to see my surgeon but they don't tell us he's running behind so we sit there waiting when we could be getting lunch or something. This time I can't blame him I guess, apparently there had been some kind of emergency, and he showed up in scrubs which most nurses, docs, etc will tell you, surgeons are rarely ever in scrubs unless they just stepped out of an OR or some other major procedure. He was also rather distracted and asking strange questions about oncologists and second opinions and quite frankly was getting our heart rates up a little bit but it turned out to be nothing. Apparently he had just gotten some email about me seeking second opinions with oncologists recently. Which is not true, we had already discussed that at my last appointment and I haven't done any other opinion seeking since then, and even then it was just the patho. So who is sending emails about me around Hopkins is the question. One I will probably never get an answer too I guess.

So that's all to report. The very next day I was flying off to Texas to see one of my very best friends get married. It was a beautiful wedding, albeit very cold for Texas. It was 90's when I landed but the day of the ceremony it was in the 50's (outdoor wedding/reception mind you). Two days after I got home I came down with some weird 24 hour flu, cold weather? Or four plane rides in three days? Probably the plane. In any case I'm fine now. Finally enjoying some outdoor time here in DC, we've had beautiful fall weather and the humidity is gone which makes me a happy camper! :-)

Still can't believe this guy is married!


Tuesday, September 18, 2012

Things Learned

*I did not write this*
It was written by a much more talented writer and blogger than I which is why I have placed the link here to her blog so you can go check it out. It's titled "70 Things I learned from having a brain tumor". I can relate to almost all of them. There are a few that I just didn't experience. For instance, I certainly don't think I came out of anesthesia acting like a sweetheart. One of the few things I can remember is being really angry and trying to kick anyone who got to close. In any case it was still an interesting and enjoyable read for me.

http://www.everywhereist.com/70-things-i-learned-from-having-a-brain-tumor/

There is a new look around here too if you haven't noticed (though I'm not actually sure who is still reading this out there...because I'm certainly not haha) but I was playing around with Blogger the other night and find I like this look better without the title on the top. The "definition" of survivor is not necessarily how I look at myself but how I see anyone who has gone through any period of great struggle or similar situation, and I thought it made for a cool header :-)   (and yes, that is my head).

Will probably have another "medical" type update sometime soon...it's getting to be that three month mark. Next week though I'm getting my wisdom teeth out. Something I should have probably done in high school (like the rest of society) but had a dentist who didn't believe in it. Then I was planning on getting them out this time last year but other more pressing issues came up (the reason of this blog being that issue) and my neurosurgeon just wouldn't take those out too while I was under :-). They are starting to become a serious problem though so next week it is. I am dreading it but hoping to recover quickly because I really can't take much more time off work!

After that I have another very exciting wedding, this time in Texas and then the year of weddings will be over! It's been fun but I'm ready for a break from them!

Friday, July 20, 2012

Clear again :-)

So I had my 5th MRI this past week (sure I'll stop counting eventually!). It was all clear once again, pretty awesome! I had my MRI on Thursday around 11 or so then went up to my surgeons clinic and (after a very long wait) saw my surgeon who said everything looked good. My "hole" may even be ever so slightly smaller than my MRI in April. I also briefly discussed the differing pathology reports with him, he said he would have the pathologists take a second look at my slides, however Hopkins pathologist Dr. Burger actually wrote part of the World Health Organization classification of brain tumors so we can probably  believe what he has to say. We also met with my oncologist who basically said that a name at this point didn't really matter as much as keeping a close eye on things and not missing recurrence if it were to happen. So the plan stays the same and I head back again in three months. Till then, enjoying the rest of summer :-)

My brain these days
This is the cavity and scar tissue left from my
 tumor & surgery, the area we will continue to watch

Friday, June 8, 2012

And the votes are in...

So this past Tuesday was the 6 month anniversary of my surgery. Time is flying! I didn't get a chance to celebrate since I had to do real-life things like go to work, but I had just spent the entire weekend in California with one of my bestest friends ever so that could probably count :-)

Got my feet wet in the Pacific Ocean!

So in the six months since my surgery I have now been back at work for four months, biked 50 miles and raised over $2500 for the National Brain Tumor Society, attended the first of three weddings for this year (in Oklahoma), traveled to California (with a lay over in Chicago long enough to count as a visit!), discovered that I do NOT look good with bangs but am now able to clip my hair back so you really can't tell it's any different from the rest (until a good gust of wind blows in), I would guess it's about 3-4 inches long at this point. I have learned way too much about brain tumors but am trying to use that knowledge to spread awareness in any way I can and I have connected with survivors, care givers and family members from all over the country, each who has his or her own awesome and inspiring tale to tell.

I received this from the mother of another BT fighter.
Made in his memory; "No Day but Today". 

Since my surgery & diagnosis 6 months ago I have also decided to seek second opinions about my pathology (you can read about why in the post right before this one). Really, I've just been wondering if someone can give me a more solid name & diagnosis. Well I've had my tumor sent to two different hospitals; Dana Farber & Memorial Sloan Kettering Cancer Center. They both came up with the SAME diagnosis, and one that is different from what Johns Hopkins said. Dana Farber diagnosed a "Pleomorphic Xanthoastrocytoma with Anaplastic Features" (although stated a differential diagnosis of a high grade glioma). Memorial Sloan diagnosed a "Variant of Pleomorphic Xanthoastrocytoma with Anaplastic Features". That's a lot to write so I'm just going to call it PXA/AF. I also can't really tell you what that means. It is a VERY rare tumor and there are few websites or articles with info. Most of my research has involved the librarians at work hunting down articles that I would otherwise have to pay for and most of those articles are based on the same studies and same people. There is more research out there on the "typical" PXA - one without anaplastic features and by many this tumor is considered low grade to the point of being "benign", however there have been instances where it has re-grown and changed into a higher grade tumor (most brain tumor survivors/experts will argue that no brain tumor is ever truly benign, there are always some that come back no matter what). There are very few studies done on primary PXA/AF (meaning anaplastic features are present upon the initial presentation/diagnosis). For those of you that have no idea what I'm talking about when I say "anaplastic features" basically this means that part of the cellularity of the tumor is more aggressive (malignant) than a typical, low grade tumor. In my case my tumor presented with mitosis (active cell division) and necrosis (cell death), both are uncommon features of low grade tumors.

So what now? I have no idea! Really. I will be making appointments with my doctors at Hopkins to go over the alternate diagnosis and see what they think. As little research as I have been able to find on PXA/AF there is even less on treating it. Because it is so rare there is no real agreed upon treatment plan and it is left up to the individual doctors/patients to determine the course of action. I have spoken with people who have/had PXA/AF and some have treated it and others have done the watch & wait. Some of their tumors grew back, some the same and others higher grade and some people's tumors didn't grow back at all (and when I say "people" I mean like four...it's rare). In any case I have another MRI & appointment with my surgeon early in July so that's not too far off anyways. I can't even begin to talk about treatments until I find out if that's even an option for me - my doctors might be comfortable just continuing to watch it closely, they may not even agree with the alternate diagnosis and if that is the case I will be asking why and for their opinions. There is of course always the option of seeing a doctor at one of the other hospitals for their opinion, but I am not there yet.

So anyways, no other news for now. Probably won't be for a few weeks until I have that appointment. I have a low key couple of weeks coming up which is good because my bank account needs a break :-)

Sunset in Monterey, CA. Too bad it was cloudy. 

Thursday, May 24, 2012

Second...and Third Opinions.

So, when I got my original diagnosis back in January I was fairly content with it. The option came up to get second opinions if I wanted to but at the time I declined. I figured that I was being monitored and if something turned up we would deal with it. More lately I've just felt annoyed and dissatisfied that I didn't get a "clear" diagnosis. My exact diagnosis from Hopkins was a "circumscribed astrocytoma with unusual features". Now there are many kinds of astrocytomas but they listed it as "difficult to classify" and could not determine which type it was. They also pointed out the "worrisome and concerning" features which included characteristics of higher graded tumors (mitosis - active cell dividing & necrosis - dead tumor cells). They named a few tumor types that it could have been but in the end didn't settle for any of them. Ultimately based on this my doctors have chosen a "watch and wait" approach. That is fine and I am ok with that but lately I have been craving an actual diagnosis...if there is one to be found.

This has led me to searching for second opinions. It's difficult because overall Hopkins is supposedly known as one of the best hospitals for neurological care and treatment. I have confidence in my doctors and am forever grateful that I have such a wonderful surgeon...so by getting second opinions I feel like I am doubting them, and I hate to make anyone feel bad! There is also a pathologist at Hopkins by the name of Peter Burger that I have been told by many people (none of whom have any affiliation with Hopkins) that he is the "best" neuro-pathologist in the country. He did not do my original report but I called and asked for him to review it. He didn't write a new report but called me back and said he agreed with the original and would be worried had all the tumor not been removed but was more reassured that it had been. In any case, I finally decided to just get the second opinions. It can't hurt (though it can definitely confuse!). For right now I am only seeking second opinions regarding the pathology - meaning that I have had my slides sent to other hospitals for their opinion but will discuss those results with my doctors at Hopkins. At this time I haven't considered seeing any specialists from those other hospitals.

The confusion comes when hospitals don't agree with each other. Then what? Especially to have 3 or 4 of the top centers in the country all saying different things. How do I and how do the doctors decide which diagnosis is "right"? How do we decide if treatment needs to change? I am doing just fine right now, why throw treatment into my life if it may not be needed and then feel crappy? And here is the problem with brain tumors. It all comes down to there not being enough research, not being enough known treatment plans that work, not being enough definite information like there is for other types of cancer. No two patients end up on the same path. Some peoples tumors grow and others don't and there is no way to predict how any single person will react.

For now my slides have been sent to two hospitals. Dana-Farber in Boston and Memorial Sloan Kettering Cancer Center in New York. I have received Dana Farbers results back already and found out today that MSKCC had completed their report and sent it to Hopkins already. Now I just need to get my hands on it. It may take a while before I get it depending on their protocol...and because I am travelling next week, if I have to drive to Hopkins to get it it will probably be a while before I get a chance to. In any case I will say that Dana Farbers diagnosis was pretty different from Hopkins...but I will share more on that when I see what MSKCC had to say. For another post...

I hope everyone enjoys their Memorial Day Weekend...basically the official "start" to summer. I will be working all weekend but then next week heading out west to California so I can't wait!

Monday, May 21, 2012

National Brain Tumor Society Bike Ride!

My dad, Daniel and I all rode the 50 mile NBTS Boston Bike Ride this weekend. We hit a few bumps in the road but we still finished. Overall the ride is much smaller than the MS ride I did last year but I think it's also much more of a "family friendly" ride too. There are also 10 & 25 mile ride options.


Right off the bat into the ride I hit a bad pothole (thanks Massachusetts roads). About 2 minutes after that I had a flat front tire. Luckily I have a spare tube and one the the roadside assistance guys pulled over and helped us get it changed out pretty quick but it caused us to be significantly behind the rest of the ride which was kind of a bummer.

Poor bike :-( First flat it's had too

Then around 30 miles (at the rest stop) Daniel's tire blew out. His turned out to be an issue with the rental bike and two tubes later, some masking tape & cardboard he was set to go. Overall my bike clock had 3 hours 15 minutes for our riding time, not too bad, we came in pretty late though because of our holdups. The whole event was pretty much over. I will say we were NOT the last ones in though, we did catch up to and pass some other riders, and there was a decent group of us at the 30 mile rest stop at the same time. 

Tire fixed, only 20 miles to go!

Total we raised $5135 for the National Brain Tumor Society, we were even #20 on the team overall fundraising list, out of 80 so not too bad for only three of us. I would LOVE to be able to put together a big group team for the ride next year. It is really not a bad ride (Daniel hasn't been on a bike since he was 12 and he managed just fine) and there are the shorter 10 and 25 mile options if 50 intimidates you. There are also 3 rest stops for food/water and some time out of the saddle. People of all ages (kiddos to the elderly) were doing the ride and of all athletic abilities, and on all kinds of bikes. No need to have a special bike or special shoes, any bike (with a good water bottle holder) will do really. So start thinking about it, it would be fun!

Oh and tomorrow, May 22, is officially Brain Tumor Awareness Day!

Sunday, May 13, 2012

Busy!

Yes, I'm still here. Just don't need this blog quite as much anymore :-)
It's been a busy few weeks and looking to be a busy summer (people have got to stop getting married!). I spent last weekend in Oklahoma getting to watch two very good friends get married, in a beautiful ceremony before their next adventure of moving to South Africa...where I hope to visit at some point this year!

I had an MRI in April, I haven't had a chance yet to drive back to Hopkins and get the official report but it seems that all is well. There was an area of potential concern, but my surgeon thinks it's just scar tissue from the surgery. I will go back for another MRI in July.

Until then I have a couple events coming up, one of them being just a week away, the Boston Brain Tumor Ride! I definitely have not had as much time to prepare for this ride as I did for the MS ride last year, but this one is also one-third the distance so I'm hoping it will go well. If you haven't yet but would like to, you can still donate to support my ride by heading over to my fundraising page here. Every little bit helps and to the many people who have already donated thank you! I appreciate it so much!


I may not be quite ready for the ride, but  my bike is!


I hope everyone had a wonderful Mother's Day!

Oh, and May is officially Brain Tumor Awareness month! If you haven't had the chance before, take a look at some of the links of the right side of the blog, learn something new and pass it on!

Tuesday, April 3, 2012

Support my Ride

This year I will be riding in the Boston Brain Tumor Ride. A 50 mile ride to raise money for the National Brain Tumor Society. Did you know that LESS THAN 1% of funds raised by the American Cancer Society is used towards brain tumor research? That is why we need the help of the National Brain Tumor Society and American Brain Tumor Association to help us find a cure!

You can visit my participant page here to donate.

You can also get more info on the ride by clicking the link on the right hand side of the page.

If you would like to ride with us please let me know!

Friday, March 9, 2012

Learn Something

Johns Hopkins has "podcasts" about different health topics. I found this one on brain tumors. The first 5 minutes or so talks about my type of tumor, and it's varying stages. If you want to check it out you can find it here: http://media.hopkinsmedicine.org/#/podcast/Neurology%20and%20Neurosurgery/Types%20of%20Brain%20Tumors/

Here's another one, all about low grade gliomas: http://media.hopkinsmedicine.org/#/podcast/Neurology%20and%20Neurosurgery/Low%20Grade%20Gliomas/

Still no word on my next MRI, I think sometime in April. Nothing else new. I still sleep too much on my days off :-) that's not necessarily related to my surgery but I'll blame it on that!

Saturday, February 18, 2012

Nothing New!

I suppose this blog is going to get neglected now that all the "excitement" is done with.

I have been back at work for two weeks now, it's going great, I am glad to be back! I didn't forget nearly as much as I thought I would, and things I did forget were minor (non life threatening). I'm definitely more exhausted at the end of the day, I'm sure part of that is I probably walk around 5 miles or so, at least, per shift because the unit is so big. I'm not exaggerating either, one nurse wore a pedometer a few times and walked between 5-7 miles on different days! My $50 ted socks I got while in the hospital (yes $50 a pair, I have the hospital bills) are definitely getting some continued use, glad I kept them :-). I am currently not working any night shifts, or more than two shifts in a row, unfortunately I'm also not partaking in all the overtime bonuses going around due to high ICU census, three shifts a week are enough for right now...maybe in a few weeks.

My hair has progressed to needing to be gelled flat in the morning, and I can't get away with skipping a shower in the morning either because it sticks up in an impressive cow-lick when I wake up.

So that's all there is to report. I'll be going back to my boring, regular, non-exciting life now.

Friday, February 3, 2012

Back to work and 20/20 Vision!

Ok, so the 20/20 vision is with my current contact/glasses prescription but it means I haven't suffered any additional vision loss from the tumor or surgery. I had to go to the "low vision" clinic this past week because of the vision problems I was having prior to surgery, some deficits I had immediately post op and the general nature of my surgery being primarily behind my eye it was suggested that I follow up here. Luckily I passed all my tests with flying colors and don't have to go back.  I am still experiencing "blackouts" in my vision, they usually occur when I stand to quickly but are not as severe or as frequent as prior to surgery. The ophthalmologist said I still have swelling in/around my optic nerves and it will take a while to go away. As it goes away the blackouts should also improve.  I had to do my third round with the peripheral vision test and hopefully my last! If you have ever had to do one of these then you know it's like the worst video game ever. Basically your head goes into a half egg shaped device, you close one eye and stare down a black hole with the other. Flashing pin point lights appear one after another around the dark hole and you hit a buzzer each time you see one. It goes on and on and then you have to do the other eye. I'm not a fan of it.


This is what it looks like. 

In other news I am finally going back to work! I start this Tuesday. I'll re-orient with a preceptor for a few days since they just moved to a much larger unit and because I was only off orientation for a month when I left just to make sure I haven't forgotten everything!

The new Cardiac ICU. It's huge! It was like no mans land each time
I went to visit, very pretty though, much nicer than adult hospitals!

That's all the news here, hopefully no more for a while! And if you're wondering, my hair is slowly making it's way back in though I think it's going to be a while before it resembles anything I could have chosen for a hair cut but oh well, it's just hair, it grows.

From the front
And the side. 



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!




 References:
    American Brain Tumor Association: http://www.abta.org/
    National Brain Tumor Society: http://www.braintumor.org 
    World Health Organization: http://www.who.int/en/
    National Institute of Health: http://health.nih.gov/topic/BrainTumors

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

Follow-up.

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

Recovery

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.