BAM! No growth!

Had my 2 year MRI this morning, and got great news!  NO TUMOR GROWTH!!!  I'm relieved and really happy.  I get to extend to 8 months for next MRI, instead of 6 months.  I couldn't ask for much more!!  I'm off to enjoy this gorgeous Seattle day, with lunch with Lynn, a 90-minute massage at Gene Juarez, and a round of mini golf in the Putts & Pints league I joined.  :)  YAYYY!!!!!!

Oh dang, it's time

So I've been a neglectful blogger. It happens when your life feels pretty darn normal. (So thankful for that!) But it's MRI time again, day after tomorrow. If it's clean, I get to move to annual scans. ANNUAL!!!! That would be so wonderful.

I'm actually feeling pretty good about this scan; for sure the best I've ever felt going into one. I haven't been too nervous or spent too much time thinking about it. I think that's a fantastic sign. I also haven't had any stress induced midnight showers like I had last scan. Twice. :)

My scan is this Thursday morning with Amy and Steph accompanying me as always. I'll post my results on here when I have them. Wish me luck!! Please send positive thoughts, prayers, and vibes my way for no growth of my little friend!! Eek!

7 plates and 27 screws

At my MRI last Thursday, I asked Dr. M about the number of screws in my skull, expecting the number to be something like 6.  Well, was I blown away when they told me I have 7 plates and 27 screws in that ol' cranium of mine.  So many!!!  The screws are tiny (like eyeglass screws) and the plates are small-ish too, but still.  I jumped off of the exam table to look at the pictures closer, and couldn't help but smile and laugh.  I feel pretty badass.  :)  My titanium doesn't show up in MRIs, so these are from the CT scan I had the day of surgery (note the 5/23/11 date).  So here's my bling!  (It's not the best picture quality of all time, as they mailed me printed pics and then I shot them with my iPhone... but it's a start.)

There are my 7 round plates, 6 in the middle and 1 to the left (which is actually the right side of my head, these scans always seem flipped because you're looking at my face, not the back of my head, in this)

Side view, obviously, of the lone plate.... and I can tell exactly where this is on my head because occasionally I bump it and it HURTS.  Also, you can see the skull incision more clearly!  Eek!

I think these are so cool!!  Apologies if they gross you out.  I didn't give much warning...

So totally unrelated to my titanium (which does not set off metal detectors, thank you for asking), I had something weird happen yesterday.  Waaaay back when all this craziness started almost 2 years ago (!!!), before I was diagnosed with a brain tumor and surgery would have seemed like the most unlikely thing of all time, I had these weird things happening with my arm.  It was these weird arm symptoms that caused me to see a doctor, who referred me to a neurologist, who referred me to another, who referred me to Dr. S and Dr. H and Dr. P (my kickass neurosurgeon team at UW).  Since surgery, the weird arm symptoms have rarely returned.  I'll get a weird tingly finger for a few minutes, and that's about it.  (Side note: these symptoms are unrelated to my tumor).  

Well, yesterday, I had my most significant arm symptom since before surgery.  My upper left arm went really achey from Monday evening through this (Tuesday) morning.  It ached enough to where it is difficult to sleep.  But it's gone now.  It felt soooo weird though.  Not physically, as I'm familiar with the weird arm things I've gotten.  But it felt so weird to feel them and know what they lead to.  It blows my mind, really.

I'm very happy it's gone now (and I can hopefully sleep much better tonight!).  It was a little like a splash of cold water to the face.  Life.  It's crazy how such small things can lead to such enormous, humungous, life-changing never-be-the-same things.

Oops, I did it again

At my appointment with Dr. M on Thursday, I told him about my middle of the night shower.  He didn't seem too concerned, and thinks it's related to stress.  And let me tell you, these MRI appointments bring me stress to no end.  Until I get good results and can relax, that is.

So it blew my mind when that night, Thursday night, the day of my MRI, I showered again in the middle of the night.  Got up, showered, put on lotion, moisturized my face, and wandered back out of the bathroom.  Only then did I subtly decide I could go back to bed, at 11:45pm.  UGH.  I end up really tired in the morning, and lack of sleep usually gives me a headache (and its only cure is more sleep, or more cowbell).

I've got a midnight shower disorder, and the only prescription is more cowbell.

I had figured with the positive MRI results and the stress melting out of my body, I wouldn't do a middle of the night shower again.  It bummed me out, and makes me feel like a total crazy person.  But I've slept pretty much through the night the last couple of nights, so that makes me feel good.  Isn't that silly?  To feel accomplished because you didn't take a crazy person shower in the middle of the night?!?!  Welp, I'll take it!

Next step: Putting a sign on my bathroom mirror that says "If it isn't 6:00, go back to bed."  Let's see if that works!

I'M ALL GOOD!

Scan was clean, no growth, got into all my appointments 30 minutes early, today couldn't be better!  Next up, lunch with my friend Lynn and an afternoon massage.  Also, I learned that I have 7 plates and 27 screws in my skull.  How badass is that?!?  Pics to come.  :)  WOOO HOOOOO!!!!!!!!  Next scan in June 2013.

Uber stressed

My next MRI is in 4 days, and I can tell that it is really wearing on me, more so than anything else in my life does.  I'm sick, likely due to my immune system not being in tip top shape due to stress; I got a cold before my last MRI too.  My feet are cramping more, which is directly stress related for me.  I'm getting a lot of night sweats, plus my crazy middle of the night confusion is happening.  I can cry at the drop of a hat, and have been.  I can tell my body and mind are under a lot of stress right now, and they're not happy.

I'm hopeful for continued good results with my MRI and no tumor growth.  If it is growing, I don't know what I'll do.  But until then, please send positive thoughts, prayers, and vibes my way this Thursday for no growth of that stupid tumor in my head.  Until then, I'm going to try and keep myself distracted with friends and dinners and things like that.  I'll post an update after I get my scan results in a  few days.

Midnight showers bring May flowers

I've mentioned on here the issues I have with determining what time it is when I wake up in the middle of the night.  I see the clock saying 3:30am, but I cannot comprehend whether I can get up, whether I'm late for work, whether I can go back to sleep, etc.  Wednesday night took it to a whole new level.

I went to Deck the Hall Ball (an awesome 9-band concert that lasted 8 hours) on Tuesday night and so I was super tired on Wednesday.  So Wednesday night I went to bed at 9pm (yes, I'm old and lame, I know).  I konked out for a few hours and awoke at 12:30am.  I was so convinced that it was time to get ready for work, I got out of bed, started the shower, TOOK A SHOWER (while thinking, man, I am sooo tired right now), applied lotion, moisturized my face, put on my bathrobe, and wandered back out of the bathroom.  At that point I realized that it was in fact the middle of the night (and kind of early, actually) so I went back to bed in my bathrobe and with wet hair.  Ughhhhhhhhhhhh....

"This blog doesn't have enough clip art!" said nobody ever.

The weird thing is, once I realized it was okay to go to sleep and that my alarm had not actually gone off, it makes me feel like going back to bed is the totally normal thing after taking a totally normal midnight shower.  I don't have this *d'oh* moment where I realize what I've done.  It just seems completely okay that I got up and showered and now am going back to bed.  It's not until the morning that I want to slam my palm to my forehead.  I don't get it.

This stuff makes me paranoid that my little tumor friend is growing and getting into trouble.  Especially with my MRI less than a week away, I'm a little on edge about the whole thing... and at the same time thinking this midnight shower thing is pretty ridiculous and kind of funny.

I am such a bad blogger

I haven't posted in almost a month.  A month!  I know, I'm becoming a sucky blogger.  But here's the thing: Me not blogging in indicative of the fact that my life is pretty much normal again.  My health seems great, I'm completely used to my short hair (and looove it), my sense of direction is almost entirely back, it's not fundraising season, and I'm just feeling very normal.  And feeling normal isn't a very exciting blogging topic!

There are some things I do want to post about: the final Brain Tumor Walk figures (as a ton of Expedia matches came through recently); my trip to Zihuatanejo, Mexico; my new brain training website I found; and feelings about my upcoming MRI in a few weeks.  I'm planning on getting caught up soon.

With Thanksgiving this last week, I'm (as always) feeling thankful for my health and the happiness that I have in my life.  Here's to another year of life (and becoming a better blogger again)!  :)

Distractions

Tonight I had a minor directional blackout, as I call them, where all of a sudden I was disoriented and didn't know which way to go.  I had just finished a Halloween-themed FlyWheel class in Bellevue with my friend Lindsay, was feeling yoked, and got back to my car at the Bellevue P&R.  I started driving through the parking lot and couldn't figure out if I needed to turn right or left to head towards I-90.  (It's left, as I can clearly picture in my head now and have done tons of times.)  But I had no idea.  Luckily Lindsay pointed me in the correct direction, and then I was good.  But dang.  I haven't had that happen in months, at least 6 months, maybe even longer.  I remember telling Dr. M's (temporary 1-time) replacement at my last MRI that I hadn't had any blackouts in a while either.  Hmph.  Just a subtle reminder of my crazy brain and its little friend...

The passing of my friend Sara has morbidity on my mind.  I get the Sunday paper (for the coupons, mostly) but always read through the main section, the local section, arts & life, etc.  Well, the local section contains obituaries and I sometimes scan them out of curiosity.  I need to stop.  I'm telling you, every time you see a picture of someone relatively young, especially compared to all of the elderly people who have passed, it is due to brain cancer or brain tumors.  Almost every time.  There were 2 young(er) people in Sunday's paper, and both had brain cancer/tumors.  This does me no good.

I think I'm just starting to get nervous for my next MRI, a month and a half away.  I hope that my little tumor friend has been quiet this last 4 and a half months, but who knows.  I'm very lucky to be in my situation with my circumstances, but I can tell I'm getting nervous.  There's just a lot of brain-tumors-and-the-havoc-they-can-wreak on my mind.

Stress? What stress?!

This is about the time that I would have been going to an MRI, if I were still on the every-3-month schedule.  But I don't have to go!  It feels great.  It is amazing to me just HOW MUCH stress an upcoming MRI brings to my life, and how wonderful it feels to not have to go until December.  It's a weight that is in my life less and less frequently, and I am so grateful for the decrease in scans.  It means I get to focus less on my own mortality and possible scary treatments and more on the life that I have, my happiness, and the health that I am so thankful for.  I'm not a religious girl, but HALLELUJAH!

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.  :)

Word from the good doctor

Last week, Dr. M (my normal neurooncologist, who I wasn't able to meet with after my last MRI) called and left me a voicemail.  I was annoyed I didn't answer the blocked call when it rang, once I heard the voicemail and realized who it was.  Couldn't risk it being some guy I'd dated and denied.  ;)  Anyway, he said that he looked at my scans and agreed that he didn't see any growth, and that he'd see me in 6 months.  Hurray!!  Feels good to have his opinion, officially.

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

MRI go time, yet again

Day after tomorrow (that would be Thursday) is my 1-year MRI.  If I get good results (read: no tumor growth), I get to extend my MRIs from every 3 months to every 6 months.  So that's a good thing!!  While extending the MRIs is the best possible outcome, it does make me a little nervous to go longer without checking in on my little friend.  If it were to start growing, we may not know for a longer time. But since it's small, I'm hopeful that if it did start to grow, it wouldn't be able to get very far in that time.  But who knows!  I'm not worrying about that at this point.  I'm trying to enjoy this potential small victory instead.  :)

I'm (surprisingly?) not that nervous for my appointment yet.  For sure, each one of these has gotten easier.  I am trying to balance not freaking out about it with not going into it totally confident (only to be totally blindsided if results are bad).  Either way, I shouldn't worry about things I don't know.  And I have no reason to think that it won't go great!!

I'll update my blog and Facebook when I get my results on Thursday.  Please send positive thoughts, vibes, and prayers my way for good, healthy results!!!!  To be continued...

Nice little Thursday

After getting the good news from Dr. M on Thursday, I had a lovely little day.  I met my friend Lynn for lunch and some quick shopping and celebratory froyo on Upper Queen Anne (have you tried Homegrown? Yum!!).  I picked up a fantastic new candle and some adorable little earrings at the cutest shop Dispatch.  A couple hours later, I had a 90-minute relaxation massage at Gene Juarez.  I was SO relaxed that I nearly fell asleep on the massage table.  That NEVER happens to me.  I followed that up with a really nice steam shower... ahh...  Then I hit up Nordstrom for triple points and got a couple pairs of sandals (I'm trying to put warm weather vibes out there) and some lady undergarments, if you will.  It was such a nice day.

The other good news is that these MRI appointments are getting easier.  While I was definitely nervous beforehand, I wasn't nervous as early as I have been for past appointments.  And the day of, I was less nervous between my MRI and the results appointment (as we waited about 45 minutes).  Plus, when Dr. M gave me the good news, I did not immediately burst into tears like I did each time before.  (I had promised him last time that I'd try not to cry this time.)  The funny thing is that when I'm not as nervous, the relief does not feel as big.  But I'll take it!!  Less nerves is less stress and that is always a good thing.

This should be a nice week, with happy hour, a Groupon deal dinner, a crab feed, Hunger Games, a haircut, my sister's bridal shower that I'm hosting, and a Mad Men premiere party.  Whew.  I hope everyone has a good week too!

I'm CLEAN!!

Got good news from Dr. M today, no growth!!  Clean scan!!  WOO HOO!  He did mention he could see some congestion in my head, mostly on my left side.  I told him I'm getting over a nasty cold.  Pretty funny what those MRIs pick up on.  :)

To celebrate, I'm treating myself to an amazing 90-minute relaxation massage at Gene Juarez and then doing a little shopping at Nordstrom this afternoon.  It's triple points, yo!  ;)

Thank you all for your positive energy and thoughts and prayers.  It helps!!!  Dr. M asked when I wanted to come in again, and I answered, "Never!"  That is not an option though... :)  So my next appointment is in 3 months on Flag Day.

WOOO HOOOOOOOO!!!!!!!!!!!!!

Rough MRI week

It's an MRI week, as my next one is day after tomorrow (Thursday), so I'm highly stressed.  Luckily the trip to Europe helped distract me, but now that I'm home and it's so close, I'm super nervous.  I also had a really awful day yesterday (terrible day at work, then got in a fight with a friend after work), so I'm just having a rough one.

I'm hoping for positive news on Thursday from Dr. M, and then I can release all of the stress and worries and negativity that I'm carrying.  Because when you get news that you can keep living (like literally living), it makes everything else, all your other worries in life, seem so small.

Please send positive thoughts, vibes, and prayers my way on Thursday morning.  I'll post my results on here as soon as I get home.

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!

Scan was clean!!!

My MRI this morning was good, no growth!!!!!!!  I'm soooo relieved.  Next scan is in 3 months.  Now it looks like I've gotta go through with my haircut day after tomorrow... ;)

Thank you for your messages and love and support!!  I'm still winning in the fight against this pesky tumor!