It's not rocket science

I read Gawker on a daily basis during my bus commute, and it keeps me up to date on happenings and snark out there in the world.  This week they posted a fantastic little article about a craniotomy that was live tweeted.  It's like "Brain Surgery for Dummies."  Might I recommend you check out "Brain Surgery: A D.I.Y. Guide"?!?

Borrowed... okay, stolen (allegedly!) from Gawker

Please note: I did NOT click on any of allegedly and potentially graphic links within the article, because I do not care to see live surgery pictures or what have you.  But otherwise, I loved the article.  I think you will too.  ;)  And I don't know who only gets a 2" by 2" square of hair shaved; some of us are much more badass when it comes to that (links to my incision money shot... you've been warned.).

This weekend includes fancy dinner with friends tonight, Breakfast Club tomorrow with an possible pedicure to follow, a Stupid Cancer picnic, a homecooked meal, and a little ol' flight to Dallas for 2 weeks (with a weekend in Austin thrown in for good measure).  I hope you all have a great weekend too!

Homerun after a near strikeout

I met up with a friend (let's call her A) on Saturday for dinner at Pike Street Fish Fry (seriously, some of the best fish and chips EVER) followed by the Stupid Cancer Happy Hour at the Garage.  We asked at the front desk if there were any groups there for the "cancer happy hour" but he said no.  I then felt really awkward and self conscious asking about the cancer happy hour, as that is something that can make people feel uncomfortable hearing, plus we didn't want to "out" ourselves to any random person there as having the cancer (or tumors).  We asked a few other Garage employees, but no luck.  A and I grabbed a beverage, wandered a bit, and just kept an eye out for a small group that may have been who we were looking for.  I started to get a little bummed that this whole thing wasn't going to work out; I was so looking forward to it!

I'm guessing we were there for an hour, and A started drafting an email to an organizer from the organization to try and figure out if the HH was even still on or what.  Right before she sent the email, we noticed 2 people looking confused, checking their smartphones, and looking around.  I said, "could they be here for it too?" and then got shy.  Luckily, A wasn't afraid to hop up, ask them if they were there for the cancer HH, and tadaaa!  We found 2 more people!  They had pulled up the FB invite (which I didn't even know existed, but do now) and found the picture of a guy who quasi-organized it, and recognized him across the room by himself.  So all of a sudden we had 5 people in our little HH!

Besides me with my brain tumor and A with her cancer, there was a guy with renal cancer, a girl with intestinal cancer, and a cancer-free guy who has been dating the girl for a month.  ONE MONTH!!  And he was already here with her at cancer HH.  He's a keeper!!  :)   We all chatted for probably 90 minutes, talking about ourselves, our treatments and surgeries, how it's affected our friends and family and work and dating (the girl said she read that date #4 is the time to tell someone new about your cancer or tumors... very interesting...), funny moments (like my pirate story from work, which I apparently did not share in detail on here, but will!), hopeful things, the I'm Too Young For This! organization, what the Seattle chapter does, what we can get involved with, etc.  It was REALLY GOOD!  So much more successful than my attempt at the BTSG, ugh.  A couple more people showed up right as we were leaving, and hopefully we'll get to chat more with them in the future too.  These are my people.

I've joined the FB group and hope to attend more happy hours and fundraisers in the future.  There isn't a ton of activity in the Seattle chapter, but A and I are hoping to help increase it.  And if anyone out there is a young cancer/tumor (20s and 30s) patient or survivor, I'd LOVE to pass along the info.  I think this group could be a really great thing!

Snapped back

It seems that I have snapped out of my little funk, so I'm feeling good!  Not sure what did it, but knowing I wasn't at my best and that it would get better over time helped.  If only I could figure out what the magic trick was...

On the travel front, I have a fun trip in the making.  I'll be spending 3 weeks in Europe for work next month, with most of the weekdays in Paris, except for 3 days in Munich and 2 or 3 days in Marseille.  I'm planning to visit my friends Jen and Jeff in Zurich and Courtney and Karl and Ryan in Amsterdam over the weekends.  I'm really looking forward to it!!  Perhaps I'll have some more Parisian observation-like entries?!  I'm likely flying out 3 weeks from tomorrow, so I've got some booking to do!!

I'm really excited for the Stupid Cancer Happy Hour tomorrow with a friend.  Here's what it's about:

Just to be clear: I do not have cancer.  I'm just in a very similar boat and the BTSG was a nightmare.

I'm venturing back out into the (online) dating world, although I do NOT plan to share any details of those endeavors on here.  (Unless they're hilarious, that is.)  But I have noticed 1 huge difference from when I've done it before to now.  Previously, I felt a little popular during online dating, if I can say that without sounding conceited.  I got winks or emails or indications of general interest on a pretty regular basis, probably averaging to 1 or 2 new contacts a day.  I probably had maybe 15-20 new profile views per day.  

This time, I added a handful of short-hair pics (obviously!) and the traffic has gone down SO MUCH!!!!!!  Noticeably so.  I get a contacted maybe once every 3 or 4 days on average, and my profile views can be counted on 1 hand each day.  Maybe, if it's a big day.  I had suspicions before my haircut that guys wouldn't like it, but then all of my guy friends told me they loved it, so I figured I was wrong.  Well, the online dating community doesn't feel the same way.  I'm not sure if the people that know me in real life have a different opinion of my 'do because they know the story behind it, who knows.  What I do know is that the number of winks and emails and profile views is really irrelevant (especially when it's mostly riff raff anyway) and that there ARE guys with potential on there.  So I'm not too worried about it.  Just making an observation.  :)

Alright, I'm off to an exciting Friday night of a post-blogging walk on the treadmill.  I know; please contain your jealousy.  Have a fantastic weekend!!!

A fantastic new resource

A few days ago I stumbled upon the site of an organization for young adult (aged 25-40) cancer patients called I'm Too Young For This! Cancer Foundation (or i[2]y).  While my tumor is not cancerous (and hopefully never will be! AMEN), the lifetime "illness" or condition I now have to live with is just about as close as you can get to cancer, IMO.  They're treated the same (surgery, radiation, chemo) and for brain tumors, the line that divides non-cancerous brain tumors from cancerous ones is pretty blurred.  Anyway, long story short, I've found this site to be really helpful and relatable and full of information.

My favorite part is a blog on the site called The Stupid Cancer Blog.  This blog is SO refreshing!!  It offers insight and puts into words some of feelings and experiences that I didn't quite know how to say myself.  It also makes me think, "Wow, I'm not the only one that feels this way!"  And support, even virtual support, is really important.

I wanted to share some of my favorite quotes from the blog, as they are spot-on to me.

From "Cancer Frenemies: When Good Friends Say Bad Things":

Cancer can bring out the stupid in people. Complete strangers and well-meaning acquaintances blurt out the most insensitive things right to survivors’ faces. 

Nita, who had a double mastectomy after she got breast cancer in her late twenties, was told by a coworker, “I don’t know why you are so hung up on breasts. Look at me; mine are small.”

Most friends and acquaintances are very supportive, even when they don't know what to say (and I don't blame them).  But the thing that drives me NUTS is when I tell someone about the differences in my brain post-surgery, specifically my completely MIA sense of direction and (dis)ability to orient myself, and the person goes "Oh yeah, my sense of direction sucks too."  I'm sorry, but it is NOT the same thing.  I'm not going to get into details explaining how my brain is now, as I've done it plenty of times on here, but there's a huge difference.  And I know the person is only saying it to make me feel like I'm not alone in my difficulties with direction, but the effect they're getting is the opposite.  And it REALLY bothers me.

From "The Fear of Recurrence: Cancer's Evil Twin":

Friends tried to brush my concerns aside. “You’ll be fine,” they would say. “You shouldn’t worry so much. We could all get hit by a bus tomorrow.” They meant well and they thought they grasped the fleeting nature of life with their freak-accident analogies, but cancer survivors don’t have the luxury of dealing in generalities. We have had been told by medical experts that we have a life threatening illness, and because of the limits of science, we must wait and see if it kills us. Or not.

This blog entry is about the fear or recurrence (ha! duh, from the title) and being hyperaware of what is going on with our bodies.  But this paragraph in particular really resonates with me.  When I've mentioned my fear of death (or more specifically, dying young or dying younger than I would like) to people, I've had people on multiple occasions tell me, "But you could get hit by a bus tomorrow.  There are no guarantees in life."  I KNOW.  But it is very different when there is a tumor or cells living in your body, that you already know is/are there, that will (likely) be the source of your demise someday.  Yes, there are no guarantees in life.  But knowing that I must wait and see if it kills me is a whole different beast.

There's also a blog entry called "Scanitis: When Cancer Screenings Fill You with Dread" that is pretty accurate, about how it feels before each MRI.  I'm pretty certain that I'll never go into an MRI feeling totally confident or remotely relaxed.  I try to prep myself for bad news, as I don't want to be surprised.  It's hard.  But the feeling after getting good news from Dr. M is the most wonderful feeling ever.  EVER.

I feel like I've just vented a bit (feels good!) and that was not my intent by sharing about this blog.  But it's so comforting to read something that someone else wrote that hits home for me.  There is an i[2]y happy hour coming up in Seattle in a couple of weeks (called the Stupid Cancer Happy Hour) that I am really excited to attend.  I'm going with a friend of mine that was diagnosed with cancer in 2011, and possibly a 2nd friend too.  And I can't wait!  It's so refreshing to be around young people (hey, 31 is STILL young, I say!) in a similar situation.  I'm confident that it'll be a much better experience than my attempt at the brain tumor support group.  Yikes.  Will let you know how it goes!

Just what I was afraid of

I ventured tonight to my very first brain tumor support group at UWMC, after a previous failed attempt.  Amy and Steph met me there, and I was pretty nervous.  I've been afraid that going to this support group, full of patients/survivors and family (or "caregivers" as they say), would freak me out.  I feel like I'm settling into a decent little reality that does include my tumor but definitely does NOT focus on it, and I love the freedom in my thoughts and emotions of not thinking about my tumor and, frankly, being lucky enough to really not have to "deal" with it right now.  (Knock on wood.)  I don't want that to get sidetracked by scary stories and situations.

So tonight they open with mentioning that a certain regular attendee to the meetings won't make it tonight, as he just entered hospice.  Not a good start.  Then I introduced myself, along with 2 other 1st time attendees, and we got to our guest speaker.  Apparently sometimes they have guest speakers, they talk for 30 minutes (of the alloted 2 hours), and they're on a topic that is relevant and that the group wants to hear about.  Tonight's guest speaker talked about near-death experiences for the ENTIRE 2 hours.  A lots of things death-related.  And how she's not afraid to die.  And what it will be like, based on her near-death experience.  And how great my book is, it has won awards, would you like to buy it, I got a 6-figure advance from my publisher, etc.

While I thought the near-death topic was somewhat interesting and it didn't offend me, I was still a little uneasy/emotional.  She then said some things to the tune of "we're all going to die, face it, blah blah blah blah, brain tumors or you could get hit by a bus, we're all dying, etc." and I couldn't handle it.  I just started bawling.  And instead of her doing whatever WOULD have been an appropriate reaction, she thought that I was crying due to some sort of "breakthrough" that I had related to her topic.  No, lady, I was crying because you started shoving death in my face, like it's no big deal.  Then it started this debate in the room (that probably had 25-30 people in it) about whether the topic she was discussing was appropriate, and whether she was being insensitive, and had things gone too far.  She came by and was holding my hand, apologizing (sort of) in front of the group, which was quite embarrassing and not helpful at all.  The post-discussion, which essentially started when I began crying, lasted probably 10 minutes, at least.  And now I feel like I've disrupted their whole meeting and am embarrassed for crying in front of a room full of strangers (when nobody else was, especially).

After that, I was glad to hear that others in the room were uncomfortable and it wasn't just me.  In fact one lady got up and left in the middle of it, saying "I want to leave" but very politely and subtly.  And all of the regulars were saying that meetings aren't usually like this, speakers usually only talk for 30 minutes, the topics aren't like this, we usually laugh a lot, and they all seemed genuinely concerned about my well-being and comfort and want me to come back to future meetings.  They all reiterated that the first year is the toughest and that it will get easier.  I got hugs and phone numbers and emails.

I really think that I picked the worst possible meeting to start out at.  But really, I didn't know if I was ready for this stuff, and I'm still not sure if I am.  They warned me that next month's speaker is about some morbid topic, so it might be better to come back in December for their annual holiday party meeting.  But I just don't know at this point.  Tonight was tough.  :(

Whammy!

I was looking forward to attending my first brain tumor support group tonight, which they hold monthly at UWMC.  I met my seester Amy downtown and we headed there together... only to find an empty conference room and not a single brain tumor patient or supporter around!  We waited for about 10 minutes past the start time, then wandered over to the neurosurgery department.  A flier said today's meeting was a "picnic" but had no information as to where said picnic might be occurring, nobody answered the phone when we called the contact number, and there was no alternate location indicated at the conference room.  Bummer.  Perhaps brain tumor patients love sunny Seattle evenings too much to attend?  I can hardly blame them.

I'm going to email the contact lady and perhaps check out a support group at another Seattle hospital instead for next time.  Sigh.  What an anticlimactic event...

UPDATE ON 7/7/11:  I heard back from the lady that I emailed, and they did in fact have their annual picnic somewhere at the hospital... but we just didn't know where or if it was even happening.  She sent me some informational fliers and it sounds like they have a decent turnout, sometimes with guest speakers, and they break the group out halfway into patients/survivors and family/caregivers.  At least it sounds like more than just me and my sister chatting with each other!  So I'll give them another try.  :)

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!