Validation!

I met with M, the counselor I've seen twice now, last week.  I'm still not sure if I'm going to keep meeting with her regularly, but I do like her and think it's always a good thing to get your feelings and fears out and have a professional help you process them.  I gave her the good news about my last MRI, and told her how excited and happy I've been to have pictures of my MRI scans finally.  I told her that I've been showing them to people and that it's probably weird that I'm enjoying having them and showing them off.  And she said, "That's not weird.  It's validation."

And that word just CLICKED.  Exactly!  Validation!!  I have proof of the reason for all of the crazy things I've gone through this last one year plus!  It's not that people didn't believe me, but it's felt like this whole tumor is there just because I've told people about it, I've told them I had surgery, I've told them about my new brain limitations since surgery.  And I know people have believed me.  But now I can SHOW them, and not just tell them.  I mean, people have witnessed my directional limitations and reminded me of things that my faulty short-term memory had forgotten, but those things don't feel quite as concrete as a picture of my brain with a tumor in it.

It still may seem weird to other people, but it's not to me.  Feeling good because I have these pictures, this validation, gives me so much satisfaction.  This business is real, this struggle is real, and my newfound strength and clarity and appreciation for life are real too.  It's not just in everybody's heads (well, it IS in mine... literally).  I have proof.

Validation is my word of the week.  :)

My badge of honor

Last Thursday at my MRI, I asked to see pictures of my tumor.  I had seen what it looked like before surgery, but hadn't seen a single image since.  And I'm kind of excited to now have pictures of it!!  It's weird, it sort of makes me feel more badass since I actually have evidence of it.  I think I'm proud!  That's probably weird too...  I've been enjoying showing people (friends, that is... not random people! sheesh) the pics.  So, here they are!  And please pardon the quality.  These are pictures of printouts that I got... so low quality, needless to say.

This is it, before surgery on 4/14/11.  This is from a VERY expensive and fancy MRI (and not the kind I usually get), so the image is pretty clear.

This is from last week on 6/14/12.  Here you can see a bit of the hole left behind.  The little bit of white tissue is remaining tumor.

This is another layer of my scan from 6/14/12, which shows more of the white tumor left behind.  But comparing these to the pre-surgery pic, you can tell that they got most of it out.

The red circles were added by me (just to clarify).  And these pictures are always flipped.  My tumor is actually on the right side of my brain, and my eyes are at the top of the pictures.  As you can kind of tell, my tumor is pretty darn deep in my head.  During surgery, they went in through the back and went between the 2 halves of my brain (where you see the line at the bottom of each pic) to dig down in there.

Having these pictures makes me so happy!  I know, I know, I'm weird.  But I'm okay with that.  :)

SUCCESS!!!

After a very frustrating morning, filled with MRI scan delays and finding out that the appointment I scheduled with Dr. M, my neurooncologist, to go over results wasn't on the books and, in fact, he's not working today....  I am happy to announce that my scan was clean!!!!  No growth!!!  When they told me they didn't have any appointment down for me to go over results, I freaked out and started bawling and was really pissed.  Luckily, Dr. M's nurse practitioner was able to meet with me on the fly and give me the good news.  I'm still having Dr. M take a look at it, just in case, but everything looks good.

My next appointment gets extended out to 6 months, instead of 3, and I even got some printouts of some of my scans so I have evidence of my little tumor friend.  I'll post those on here soon.

I had a massage scheduled for 1pm today, but since this nasty cold has hit me, I had to reschedule.  Colds + massages = getting more sick.  So I have that to look forward to this weekend.  Plus I'm having a happy hour tonight at Brave Horse to celebrate my good news.  Feel free to join me!  I'll be there before 5pm to try and stake out a good spot.

I'm feeling emotionally drained after the hijinks and stress of not actually having an appointment after my scan to go over results (it was neurooncology's scheduling mistake, not mine), but I'm relieved that I got a clean bill of health.  I even made a brain tumor dominator friend (and met her husband too, who was very nice as I was freaking out before my MRI being told I did not actually have an appointment with Dr. M).

Woooo hooooooo!!!  Thanks for all of the positive thoughts and messages today!!  xoxo

Sleep it up, let it out

I met last week with Dr. D, my sleep doc, for a final appointment.  While I wasn't keeping track of my sleep on a log, he wanted me to try and stick to a sleep schedule up until then and take mental notes on how I was doing.  Well, I'm not sure if I'm sleeping much differently than before I started seeing him.  I'm sleeping better than when I started the sleep schedule and had to really restrict my sleeping, but I feel about the same otherwise.  Maybe I'm just destined to sleep like this?  Who knows.  I have been trying not to go to bed before 11pm, so that I'm tired enough and won't take as long to fall asleep.  But other than that, I'm not sure I've taken much from this.  Well, besides the fact that this may just be as good as it gets.  Sigh.  I didn't expect a ton so I'm not that disappointed.  But I do know it could be worse!

I also met last week with M, the counselor that was recommended to me by a friend.  We talked about things and I came away from our (emotional) talk with some goals for counseling of learning to accept my situation, knowing how to deal with stress and emotion from it, and really just having someone to talk to when I feel like I need it.  She talked about thinking of my tumor as a friend that will be with me forever, instead of as an enemy inside of me.  Maybe naming it (which I've considered) and creating some sort of special "place" to keep it, like a happy little place to keep it happy made via crafting of some sort.  I'm feeling good these days, even with my upcoming MRI next week, but know it will be good to have someone I can talk to when I feel like I need it.  I have an appointment scheduled with her again for a month from now.  We'll see if this is helpful and what I can take from it.  (More) acceptance, I hope!

My stupid burden

I have been feeling so good, so happy, but I know that I can't feel that wonderful all the time.  Tonight, my spirit broke a tiny bit.  I haven't cried in a while, maybe a month.  That's pretty good, considering the year I've had.  :)  But tonight I was sitting at home, flipping through an issue of Women's Health magazine, when I came across an article about the risk of stroke to women.  Specifically, they talk about the relationship between strokes and migraines.  It says:

"[According to] an associate professor of clinical neurology... women who have migraines with aura need to take extra care to live healthy lifestyles to lower their risk for stroke."

About 20% of migraine sufferers get aura symptoms with their migraines, and I am one of those lucky women.  I get visual disturbances mostly, but in the past I've also had numbness and tingling in my face.  I get the vision stuff before the headache, so it signals me to take my migraine medicine, and I feel lucky for the heads up.  I take a low-dose aspirin everyday to help lower my risk of stroke, specifically because of my migraines with aura.

Something about that sentence just got to me tonight though.  I immediately started crying.  This migraine stuff isn't new for me by any means (it started in middle school), but sometimes, like tonight, it just feels like so much.  Stupid migraines with aura that increase my risk of stroke, my tumor and the vision and directional challenges that come with it, circulation issues in my feet, sleep problems, (non-dangerous) heart palpitations, and the still mysterious tingling arm and hand from a year ago (but luckily, it rarely happens).  I'm just having a little pity party for myself and wishing that I didn't have to deal with the health issues I have nor worry about what they mean for my life.  I am by no means the only person to have health challenges, everyone does.  But tonight they just feel a little heavier than I would like.  And I'm sad for that.

Random bullet point list

I love lists.  Listy list lists.

• For a couple months after surgery, I'd get this thing where when my heartbeat is elevated, it pounded super hard in my head.  It's very uncomfortable and kept me from wanting to work out or even walk fast up hills.  Then it got better.  Well... it's been doing it again.  A lot.  It just about stops me in my tracks.  It's bizarre and quite annoying and slightly painful.  :(
• When I get home at night, all I do all evening long is run my hands through my hair.  It gets all puffed up and looks QUITE gorgeous, and it feels good on my head.  Plus it feels cool to my hands, since my head feels so different than it has my whole life.  So, needless to say, if I see you after 7pm, my hair is probably looking REALLY good.  I'm currently taking volunteers for head rubs and hair puffing.
• The cleaning out and cleaning up of my life continues.  I turned in probably around 75 CDs to Easy Street today to sell back to them, and they took all but 3 (that were scratched).  It earned me $162 in store credit!  Yessssss!  And got some old clutter out of the way.
• I'm thrilled and relieved to have gotten such great feedback on my new haircut!  I knew my girlfriends would like it, but I've received (very unexpected) compliments from heterosexual males ("stunning," "amazing," "supermodel," "better than before").  I'm amazed and VERY flattered.  And I'm sooo glad that my short 'do isn't a turnoff!  ;)
• I talked to Dr. M a bit at my last MRI appointment about my tumor, what he expects, brain cancer, etc.  I'll post a separate update to include the information I received.  It was reassuring.
• My new haircut gives me the best bedhead EVER!  I've been tempted many mornings to take a picture.  Maybe I'll do it one of these days.
• I recently finished some pretty badass crafting.  I'll share results soon...
• I never posted anything about my appointment at the sleep clinic (which was sandwiched between the days of my MRI and haircut... it was a busy few days!).  I met with a new neurologist, Dr. B, and talked to him about my sleep issues.  Most I've had all my life but some have been even worse since surgery.  He was really nice and seemed intrigued by my situation, so I have a sleep study scheduled for tomorrow night.  I'll go to Harborview around 7pm, stay the night there in a special hotel-like room with lots of monitors hooked up to me (lights out at 11pm), and they'll wake me up at 7am.  I can shower there in my private bathroom to get the goo out of my hair and then I'll get the results from Dr. B a couple of weeks later.  Should be interesting!!

That's all.

Paranoia

I've become part of a vicious cycle that I imagine will be a part of my life for a long time.  Scary MRI appointment, relief from good news (HOPEFULLY), 2 months of relaxation, and then a month of nervousness and paranoia until my next MRI.  At least, that is how it seems to go since surgery.  I'm a little under a month away from my next MRI and I'm starting to get really nervous.  Paranoid, really.

I've been sleeping really terribly, which has affected my head my whole life (more headaches) and my eyes since surgery (feeling strained and tired and less than stellar).  And for almost the last week, my eyes have been exceptionally terrible.  They feel tired and strained all day long, even when I wake up.  It's like I've been reading on a computer screen all day... except I haven't.  They should be somewhat refreshed from the bit of sleep I'm getting.  Granted it's crappy crappy sleep, but still.  They've been so bad that I skipped a friend's going-away party on Saturday night because I was nervous to drive at night to get there.  My logic tells me that my poor sleep has finally built up enough trouble to cause my eyes to be very unhappy with me, but my paranoia tells me that my tumor is growing and causing this.  After all, it is in the vision part of my brain.

I am afraid to type out my fears on here, as I'll start to cry, but the summary includes fears of tumor growth, radiation, and going blind.  Not the life I dream of, that's for sure.

I called Dr. M, my neurooncologist, today and spoke with his nurse.  I told her about what's been going on in the last week and asked for a recommendation for a sleep doctor.  I'm hoping she calls me back tomorrow after talking with Dr. M, as I just don't think I can wait until 12/8 to try and get this resolved (or at least on the 1st steps to resolving it).  I've slept poorly my WHOLE life and it's really starting to cause me some serious trouble.  And if it's causing symptoms that make me paranoid that my tumor is growing, that is really a bad thing.

We need your help!

Per the National Brain Tumor Society:

Your Members of Congress are making really big decisions this fall about biomedical research funding on brain tumors and other forms of cancer.  

Hanging in the balance of the budget debate in Congress is how much money the National Institutes of Health (NIH) will have to make grants to find new therapies and ultimately a cure for brain tumors. The federal government is the largest funder of brain tumor research in the nation, therefore, we have a lot at stake.  

NIH funding is at risk unless we pressure Congress to maintain it!

Please help by taking action and sending a letter to Congress you can let your voice be heard and make our priorities known.  Click here to fill out a short form, which will send an email to your legislator (mine went to Patty Murray).  It's that simple and really very easy!  Nothing to print or mail in, just a powerful and important message to our leaders.

I am lucky at the moment, not needing additional treatment or surgery, but that could change at any time.  While surgery, radiation, and chemotherapy are brain tumor treatment options used everyday, I am hopeful that there will be new options by the time I need them.  PLEASE help convince Congress to keep funding the NIH!!

The situation

While I may enjoy Jersey Shore, let me start by saying I am speaking about my specific situation and not The Situation, just to clarify.

But I DO love me some John Mayer!  Holler!!

John Mayer distracts me, and I digress...

The day we fell in love, adult braces and all

Sorry, back to the serious stuff...

People have asked friends and family about the severity and details of my tumor and situation, so I wanted to share what info I have.  I am not an expert (except in John Mayer... sorry, still distracted) and this is my understanding of my tumor and tumors in general, from talking with my doctors and living with an unwanted visitor in my brain.

Brain tumors are a bit different than tumors elsewhere in the body.  Other tumors are more black and white and more easily fall into the cancer versus non-cancer and benign versus malignant categories.  Brain tumors are not necessarily that clear.  

It is my basic understanding that cancer means that tumors in one area of the body cause tumors in other areas of the body (to really dumb it down).  Brain tumors are not typically cancerous and are not usually caused by (or cause) other tumors.  Some can be cancerous; mine, luckily, is not.  It is having a big party in my brain but luckily has not invited any other organs to attend.  It's a very VIP party.

Brain tumors are also not easily categorized as benign (good/harmless) or malignant (bad/harmful), like other tumors can be.  They fall into the level/stage categories like other tumors; mine is a 2 out of 4.  However, there isn't really any type of brain tumor that is straight-up benign and can be ignored or forgotten about.  Rather, they're lower (more benign) or higher grade (more malignant).  Mine is/was well-behaved and low grade, meaning it's not growing or slow growing and not causing too much trouble.  Lower grade tumors may also not yet require additional treatment, like radiation or chemo.  But all brain tumors, even the more benign ones, will most likely grow back over time.  There is always a possibility (and likelihood? not sure) that tumors will become more dangerous over time too.  My tumor could grow back more aggressively or be a higher stage; I'd need additional treatment then.

So, the moral of my tumor is that it's 1) not cancerous and 2) low grade/more benign.  However, the 2nd part of that sentence is only true currently and could/will change.

As my favorite loverboy John Mayer says about me, my body is a wonderland.  If only I could kick my unwanted tumor groupie out permanently, life would be even more grand.  

(You all know JM was bound to make an appearance on here eventually...)  ;)

Could I BE wearing any more accessories?!

The hives block party that has taken over my body continued to get worse today, so I went back into the hospital and got a new mix of delicious pills to hopefully reclaim my lovely pale skin back to its pale non-red and non-bumpy glory.  I'm glad to report that the hives are already responding and starting to go away.  I'm not sure if you know HOW MUCH of a downer it is to get through something as scary as brain surgery, only to have your body say "well too bad! screw you! it's rash time!"  It really affected me, and the slow vanishing of my hives now is having equally uplifting improvements to my attitude.

My friend Sydnie picked me up earlier to today to take me to the hospital, and I was sporting a new hat, a scarf (to cover my hives), a jacket, and sunglasses.  I looked like I was on the run from paparazzi, according to Sydnie.  It reminded me of that Friends episode where Joey puts on a ton of clothes on top of each other and says, "I'm Chandler Bing.  Could I BE wearing any more clothes?!"  I felt like that today, except it was "Could I BE wearing any more accessories?!"

The male version of me today

I'm still not breathing a sigh of relief about the results of my pathology, but I'm sure as I continue to adjust and adapt I'll feel more thankful and lucky about the prognosis.  I think I still just need a bit more time.  But things are improving, so that's good.  :)

I'm looking forward to a hopefully sunny weekend in Seattle with friends, hats, and clean shampooed hair.

The news

I'm keeping this short-ish for now, as today was completely draining and I have finally really hit my mental and emotional capacities.  Really.  I had my follow-up appointment with my neurosurgeons today.  I'll add more details later when I have the energy.

They got most of my tumor out during surgery but not quite all of it (as expected).  There are also some tumor cells left in the surrounding tissue around where my tumor was (also quite normal/expected).  My tumor is a grade 2 astrocytoma.  For now, I don't need additional treatment.  We will just wait and monitor it.  Once it grows, and someday it will, we'll need to treat it.  Likely with radiation, chemo, more surgery.  It was a well-behaved tumor in my head, but it could grow back more aggressively in the future.  We just have to wait and see.  But for now, this is good news.  Or at least as good as we could have hoped for.

The doctors also told me I had a tiny stroke during surgery, which they didn't know until it showed up on my post-op MRI.  We have no idea if it's impacting me and probably never will.

I got my stitches removed and am SO EXCITED to wash my disgusting greasy hair tomorrow for the first time.

I developed an allergic reaction yesterday to the anti-seizure meds I've been on (UPDATE: and the adhesive used on the monitors they stick to your body in the hospital), so my body is currently broken out in disgusting angry red hives.  We're talking entire neck, plus face, torso, sides.  It itches and looks disgusting.  So that's been a bit of a bummer, to say the least.

I haven't googled my tumor and don't plan to, and I really do not want to hear about the interesting facts or stats people find on these tumors.  I'm just putting that out there now.  Every tumor is different and there's no way to predict how mine will act, how long it'll stay quiet, how quickly it'll turn my life upside down again, etc.  I appreciate everyone's well wishes and will get back to everyone as I'm able.  Right now, I'm just trying to process.  And not itch my hives to death.

My sister and cousin were happy at the news today and wanted to celebrate, but I don't feel like celebrating.  I don't feel relieved.  I'm sure that will come in time, but for right now, I'm just completely drained and exhausted and not quite ready to have to face the fact that I will live with this brain tumor condition for my entire life, however long or short it may be.

Thank you to everyone for your support, and please understand when I don't reply immediately to messages.  I'm just trying to keep things together.  I am exhausted.

I'm hoooooome!!!!

I'm home, 2 days after freakin' brain surgery!  Can you believe that?!?!  When they said I would have a fast recovery period, they really meant it!

First off, I have to thank my cousin Steph for all of her timely, accurate, and entertaining updates to my blog.  I've gotten a ton of feedback saying that people really liked the updates.  Steph, you rock.  ;)

I am also owing big thanks to my sister Amy as well, as she and Steph are going to be taking turns staying with me for the next few days.  I'm not that entertaining these days and like to lay around eating soup and pudding, so they are awesome for just hanging out and helping.  Hopefully my 1-month free NetFlix trial streaming through my TiVo will help make this more exciting for them too.  :)

Overall, I'm feeling really good.  I've had a headache on and off, and I have a couple pretty tender spots (one at my right jaw hinge and one of the right side of my neck) which I think are from the very weird position they put me in during surgery.  Painkillers have been helping (plus foods not requiring much chewing, as it hurts my jaw).  I'm in very little pain and have been able to control it well.  All of the doctors at nurses at UWMC were pretty great, and I was surprised to be sent home so quickly.  I do feel confident though and have a schedule written up for my new drug regimen, so it should be easy to stay on top of things.  My incision hurts a bit at times, and I'm definitely on the light-headed side of the spectrum, but I'm able to walk around normally.

I'll go meet with my neurosurgeons next week (Wednesday) to get the results of the tissue analysis as well as my prognosis.  Keep your fingers crossed for that appointment.  I'm a little bummed, as I talked to Dr. S this morning.  He looked at my after-MRI that I had done yesterday, and it appears that while they got most of the tumor out, they didn't get the whole thing.  Sigh.  I think it was a safety issue, and they were able to remove as much as they felt safely could be.  I think he said something like 90% came out... but I might have remembered that wrong.  Having some tissue left in my head makes it more likely that I'll have to have additional treatment (like radiation and/or chemo) but we'll just have to see.  I'm not worrying too much until I actually have something to worry about.  In the mean time, I am just SO RELIEVED to have made it through surgery without complications and feeling so good!!!!!  Plus I have a pretty hot hairdo of 4 braids right now.  haha

I know that some people out there want to see my incision, and some don't (as it is graphic), so I've uploaded a picture of it to a page on my blog that you have to actively click on to see.  If you don't want to see it, don't click; if you do, do!

Link to the graphic picture of my large head incision: proceed with caution!!!

Thank you again for all of your love and support.  I'll post more details and info soon.  And if you have any questions, please feel free to send them my way, as I'll probably put together a post-surgery FAQ page one of these days.

FAQs, pre-surgery

I've had a lot of people ask me questions about this whole experience (and some people, I think, are afraid to ask), so I thought I'd put some of my most frequently asked questions out there.  If you have any other pressing questions, of course feel free to ask.  :)

What will the surgery be like?
I'll go in super early (5:15am-ish), get an MRI (to pinpoint the exact location), get an IV, and get knocked out.  After I'm out, they'll shave off the hair they need (NOT all of it, whew) and do the other pre-surgery prep (tube in my throat, tap in my spine, etc.).  They'll make a U-shaped incision in the back of my head, peel back my scalp, drill and saw out a piece of skull, and then do their business.  After it's over, they'll screw my skull back on with titanium screws and staple my scalp back on.  Fun stuff.  That should end in the afternoon, and then I'll go into the recovery area for a little time before moving into the ICU (maybe 5pm-ish).  That's when my family will get to see me again.  But in the meantime, nurses will be updating them every couple of hours during the surgery.

How much hair will they take?
They're shaving the hair off the back of my head, shifted slightly to the right (as my tumor is along the center line, but to the right).  I'm *guessing* it'll be about half my hair and I'm hoping that they won't take any in the front and sides.  That would help me disguise the shaved part easier.  But I'd been thinking about doing something different with my hair for a long time, so I'm actually not at all freaked out about losing my hair, as it's giving me a push to shake things up.  I kind of like that.  :)

What is the recovery time?
Assuming there aren't any complications, I'll be in the ICU for 1 night and then the regular non-ICU hospital for at least 1 more night, but probably 2 or 3 more (depending on how I feel).  Apparently recovery is pretty quick, as it's only the incision that needs to heal.  The brain itself doesn't need any healing time really.  I should be back on my feet within a few days of surgery, but I'm expecting to be quite tired and have some incision pain.  I'm taking 3 weeks off from work all together.

Can I visit you in the hospital?
I am hoping that I'll feel up to having visitors after I'm out of the ICU (so maybe late Tuesday/Wednesday/etc.) but I'm going to have to play it by ear.  A friend from college just went through the same thing (brain tumor surgery a month or 2 ago at my same hospital with my same doctors), and she said that she was super tired in the hospital and not really feeling up to visitors.  So we'll have to see.  My cousin Steph will be updating my blog, so it should say if I'm wanting visitors or not.  Regardless, I'll definitely want visitors when I'm at home!  :)

Have you been talking to anyone (professionally) about this?
I've met with a psychologist (Dr. G) twice now, as my work's employee assistance program covers 4 free sessions.  Dr. G specializes in medical situations and cancer, so she's given me some techniques to help deal with the stress and ideas to help make the day of surgery as smooth as possible.  I'm not sure if I think it's really helping much beyond that, but I figure it can't hurt!!

Speaking of, is this cancer?
We won't know what exactly my tumor is until 1 week after surgery, but chances are it is NOT cancer.  It's my understanding that brain tumors do not necessarily indicate cancer, like some tumors in other parts of the body do.  Even if it isn't cancer, I may still need chemo or radiation after surgery.  But we'll have to wait and see.

Is there a support group you can meet with?
I found a brain tumor support group at the University Hospital where I'm having my surgery, and I'm thinking I may want to go to that after surgery.  However, I don't want to go ahead of time, in case it freaks me out.  But I'll decide that all later.

How are you feeling?
Generally, I'm feeling positive, with some times of nervousness, anxiety, and fear in there too.  But mostly I'm feeling good, happy to see friends and family, and looking forward to getting past surgery.  I'm very independent and have decided that I'm not letting this stupid tumor determine any part of my life or make any decisions for me.  I feel like this is just a speed bump in my life, and I'm excited to get to the other side of it.  Maybe this is my big life challenge; I'm thankful to be getting past it so early in life.

What can I do to help?!?
Everyone has been really fantastic!!  Your emails and calls and cards and gestures (and cookie bouquets, yum!) have really meant a lot to me.  Keep reaching out and don't be afraid to say hello or ask questions. After surgery, I'll definitely want visitors when I'm home (and hopefully in the hospital) since I'll be cooped up in my apartment for a couple of weeks.  Feel free to bring magazines or movies.  ;)  I've also set up a food delivery schedule site, which has a calendar of days and you can sign up to bring dinner over on a specific day.  I'm hoping that people will sign up for that, which will both help me with dinner (since I suck at cooking for myself in general, let alone after surgery) and give me visitors!  If you sign up, please bring enough for yourself too and plan to hang out and eat and chat.  I'll be sending out the link sometime this week, so keep you eyes peeled for that, if you're interested.

Let me know if there are other questions I missed, and I'd be happy to answer them!