Wednesday, May 30, 2012

i thought of a great title...

but now I can't remember it. Oh yeahhh "making memories". As this past weekend was the Memorial Day holiday, it seems appropriate. Memorial Day is like summer kick off day- and we did it up right this year. Took the kids to the pool, had a BBQ at the sister's, stayed up way too late watching scary movies and eating candy. (Ok, so that last one actually happens all year round but anyway...)

I took the boys and their friend to the pool Sunday. It really brought back a ton of memories. When the sister and I were kids we would spend summers with our grandparents. And a couple of those summers were spent living "in town" so we road our bikes to the pool almost daily it seemed. We started swimming when we were 2, in that same town pool; went off the high dive for the first time at our 5th birthday, at that same town pool (wearing the little plastic inflatible ring with the duck's head, just in case). I can still taste the taffy from the snack stand, eating it during a pool break, sitting on the grassy hill outside the fence. And there was a little play area there, too. It had this... thing. I don't even know what to call it! Like a giant round swing. I've never seen one anywhere else. It was made of wood, with a bench runnng all the way around to sit on, your feet dangling down in the middle, and some kind of bar going around to hold onto. It must have been connected to a pole or something and it would swing back and forth if someone pushed off. But not just straight back and forth, it depended where each kid was sitting and who was pushing off. And I never thought of this... ride?... swing?... thing, until I started chasing the memories of summers passed.

The pools these days are a bit more upscale- not just "play areas" and "diving areas" but waterslides and whirl pools; lazy rivers. But they still feel the same- hot concrete under your feet, the water so cool on your skin when you first slide in, the sun beating down on your shoulders. I want my kids to have those memories, too.

Thursday, May 24, 2012

what a difference it makes

I've been tired for YEARS. I mean, since I was still in school, and I'm not talking about college. No matter how much sleep I would get I still felt tired. This last couple years, with all the surgeries, chemo, etc, I've developed sleeping habits that basically meant I was spending more time in bed than awake. I've mentioned it to every doctor I see and we would change my medications around or to a different type to try to alleviate the sleepiness but nothing really helped. I even went to a sleep doctor and was tested for sleep apnea- and now wear a C-PAP mask to sleep at night.  Even though I sleep deeply through the night, I was still taking naps every day. (Is it still a nap at 3+ hours?) I was starting to think that this was just going to be my life, forever.  Then I met this wonderful seizure specialist- in a most round-about way- and he simply said "Why don't we split your seizure med up across three times a day instead of twice?" Holy crap! I mean, it's still the same total so I really didn't expect much difference but.... wow! I almost never take naps now. I'm sleeping about 7-9 hours a night, depending when I go to bed, and waking up feeling... awake. It's awesome. :) So. the new problem? Now that I have all of these hours to fill, what to do with them? I joined the Rec Plex so I have a place where I can go swimming or work out, take various fitness classes. Right now I'm just using the pool and the aerobic workout room (i.e. bikes, treadmills, ellipticals- those bastards :) ). I can do 30 minutes on the bike but only 2 minutes on the elliptical. So far. I'm also planning to sign up for a beginning yoga class and a belly dance class there. Ohhh la la- shake it. ;) I'm currently taking a kundalini yoga class at the local community college. It's different than "traditional" yoga. It's more about expanding awareness. And it's done sitting or lying down, so a huge plus. And, my husband and I are planning to attend an NF Forum in New Orleans next month; we're going on our first family vacation with the boys this summer, and we are already planning out of town trips to an NF2 Gathering and a wedding this fall. Not being tired ROCKS!!

I guess the moral of the story is... a tiny change can make a HUGE difference. And, of course, Never Give Up!

Monday, May 21, 2012

promise kept, a day late

I'm recovered from a wonderful, crazy, emotional, insanely packed week. Mostly. And, since it's NF Awareness Month, I'm going to finish the rest of my NF story. As far as it goes anyway.

After the surgery at 17, I had the remaining right side tumor zapped when I was 21. (Gamma Knife surgery- just Google it.) And then all was well- for awhile. I continued having yearly MRIs, first just my brain, then brain and spine. And new little teeny tiny tumors kept popping up on each one. But they weren't doing anything, so we didn't either. I finally finished college, got married, bought a house. Then, at 32, we heard the dreaded word "Everything looks stable.... but...". Those 3 little letters can so easily scare the SHIT out of you, when they are coming from your neurosurgeon. One tumor had actually been growing for years but so slowly that it wasn't noticeable from year to year. It's when they compared the very first scan to the last scan that it became obvious. As a team we once again decided that Gamma Knife was the way to go. So, I was zapped a second time. And hoped for another ten year break. Didn't get it. A year later the scans showed that the right side AN/VS we had original treated with GK ten plus years ago was growing again. (In fact, we discovered later there were actually two different types of tumor growing together plus a third tumor of yet another type growing close by. My brain is like a tumor garden.) My team, who I had been seeing since that first tumor 20 years before, suggested we try the GK on that area again. But, here's the thing, there are side affects from GK, and the risk of them increases each time you do it, especially in the same spot. Also, NF2 tumors are different from regular tumors. They don't always respond the same way and sometimes radiation can be pretty ineffective on them. Added to that, there was a tumor growing at the base of my skull, sort of right side middle that I could actually touch and feel. When I would lean my head back to say, look up at the sky, or lay on my stomach to watch tv, I would actually get light headed and go fuzzy from it. But when I brought it up to my team, while they admitted it had grown as well, they brushed off my concerns by saying there really wasn't anything they could do about it anyway.
So, let me get this straight? You don't want to listen to my concerns about which area is causing the most issues for me, your patient, or my thoughts on which treatment option would be best for me, again, the patient. Well, screw you! I'm outta here. This is my LIFE we are talking about and I want someone who cares about it as much as I do taking care of it. So, off to Chicago we went and met the most amazing doctors. To make a long story shorter, they agreed that yes, surgery was a better option; that yes, that tumor needed to come out ASAP and "oh, they said it couldn't be done? Well, they aren't us."
Surgery scheduled and completed, resulting in a 4 week hospital stay- that was not even remotely due to the fault of anyone involved, just the complexity of the procedure (it took 3 seperate surgeries to complete) and the fact that, apparently, I am allergic to penicillin. Ten months later I completed a 5K walk, with the help of my family and best friend. But, mostly, with the help of my sister who practically dragged me the last mile. :)
Another year (2010), another (almost as) complicated surgery. Only a 2 week stay this time instead of four. (We knew to steer clear of the penicillin this round.)
And then just 5 months after that, tumors still growing, we decided to try a new tactic. I started Avastin treatments (once again, Google is your friend, loyal reader- you must be loyal if you haven't given up on me yet) right after Christmas. Every 2 weeks I traveled from STL to CHI for my infusions. But at the first 3 month check up it was so worth it because I heard these words "Everything is stable- no growth!" Even my doctor was excited. I stayed on Avastin for a year and even now, 5 months after I stopped, I'm still showing "Stable".
This team saved my life, I have NO doubts about it. But they also saved my quality of life, and when you suffer from a disease* with no cure, that is just as important. So, though I doubt they will ever read this, thank you Dr. Bendok, Dr. Fishman and Dr. Raizer. You are truly heroes among men.

* For those who say NF2 is a disorder, not a disease, I offer up this definition of disease from


[dih-zeez] Show IPA noun, verb, dis·eased, dis·eas·ing.
a disordered or incorrectly functioning organ, part, structure, or system of the body resulting from the effect of genetic or developmental errors, infection, poisons, nutritional deficiency or imbalance, toxicity, or unfavorable environmental factors; illness; sickness; ailment.

Saturday, May 19, 2012

busy, busy, busy

This week has just been totally jam-packed! So I think, to fit it all in, I'm just going to do a run down. It's not nearly as clever but it is easier, and since this week isn't over yet I need easier.

Monday: Since I missed our family Mother's Day outing I went to see the Madre. I love, love, love my mom. She really gets me, you know? Especially my goofy sense of humor. She recently got bit by the reading bug again (finally!) so I bought her a new book as part of her Mother's Day gift... and she had already read it! I haven't even read it yet. LOL After leaving her I swung by the boys' doctor's office to pick up their scripts and was going to get them filled when the husband texted me to say "Pick up K from school- he doesn't feel good and his back hurts so he doesn't want to walk home". So I changed course and went to get my baby (he's 11 but he's still my baby). He was sitting on the bench by the door and was so out of it he didn't even see me sitting there for a minute, a teacher had to go get him. He came home and passed out on the couch and, despite the nap, didn't complain about going to bed that night, so I knew he wasn't faking.

Tuesday: K was supposed to have choir practice before school (they are singing at the Cardinal's game July 8th!! Go to the game. LOL) and then 5th grade awards ceremony at 9:00. When I went to wake him up though, he asked to stay home and he looked so sickly I said yes, even though no fever and no throwing up usually means no staying home. So, there went my plans for the day, too. I just took a nap, did errands- groceries, library, something else I can't remember. Then hit the sister's to borrow her yoga mat and picked up dinner on the way home. Yes,. I picked up dinner even though I just bought groceries.

Wednesday: Got the kiddos off to school. Got a pot roast and the fixin's going in the crock pot. Bummed around the house. Went swimming at lunch time (boy, was it crowded). Went to my first ever yoga class that night. It's Kundalini yoga so it's all done sitting or lying down. Yay! Came home to the best pot roast ever (how in the world did I do that?! I'll never be able to do it again.)

Thursday: I'm the one who woke up sick this day. So, I just got the kids off to school and went back to bed. Then spent most of the day just reading. Ordered delivery for dinner. Barely ate any of it. Just blah- no energy, no appetite. It was also World NF Awareness Day. Since I missed posting the rest of my story that day, I will post it later today or tomorrow. Probably tomorrow.

Friday: A whole week's worth of go wrapped up in one day. The last day of the school year!!! Weeeee! Got the kids off to school. Took a shower. Hit the bakery (which I should have done Tuesday but oops!) to see about a cake for S's 13th birthday party tonight. I was too late to order so I left to go search elsewhere (but I really, really love their cakes). Went to the nail salon to get my nails all did up- I had nibbled, snapped or torn the tip off of every single one this week. Went back to the bakery and just bought one of their "frozen fresh" cakes. They personalized it for me "13 years of awesome"... that's what he asked for. It's his birthday. Then Target for party supplies, Chick-fil-a drive thru for lunch then the school parking lot to get the last good parking spot for the "Last day of school parade". My first one ever- and last chance since my baby is going to be a middle schooler next year! Ate lunch in the car then headed out for one of the few remaining spots in the shade at the beginning of the parade route. Then 45 minutes to kill until it started. The fifth graders got to march at the beginning so I made sure to get K's attention (in a non-embarrasssing way, I swear!) as he went by so he'd know where I was. Then, as the parade came back around, I kept my eyes peeled for him so I could wave again. Only, I thought I missed him because I couldn't find him until the very end. He and two of his friends were the last of the 5th graders to go marching by and they stopped to give me a hug! I felt really special (and no, I'm NOT being sarcastic. It was really sweet). Then, as they scooted back in line, I yelled "Sixth graders!!! Woooo!!" really loud- but they weren't embarrassed, they just joined in. LOL

That sounds exhausting, no? Well, guess what, that was only HALF of my Friday. I'm getting tired again just thinking about it.

After the parade I checked K out of school early, came home to pick up S then we all went to the Rec Plex for some working out and swimming. They played. I did 2 minutes on the elliptical (yes 2; my weak thigh muscle's going to need time to work up to more) and 30 minutes on the bike then headed down to the pool to join the boys. They played some more and I did laps. On my back. It's not as good a workout as regular swimming but it's so much easier on my neck. I don't know how many laps I did but I swam for about 30 minutes then we left at 5:00 to get stuck in rush hour traffic on the way home (planned that out well, didn't I?). Dinner was app-happy (toasted ravioli, taquitos, chimichangas, etc etc etc) to celebrate the last day of school AND the season finale of Supernatural. (It was kinda slow but the ending was AWESOME! Holy crap! I can't wait until next year.)

Then I went to bed. And slept 12 hours straight without even getting up to go to the bathroom.

But, like I said, the week isn't over. I have S's 13th birthdauy party tonight. Then Girl's Night Out (which has turned into GNO+husband/boyfriend. Whatever. I'm in. ) But I'm pretty sure I have tomorrow off. I think. I hope.

Sunday, May 13, 2012

happy mother's day

Now that the sister and I are all grown up and moms ourselves we have a mother's day tradition of church then brunch with our mom, my sister's MIL, and the rest of the family. Except my kids because I'm the stepmom and the mom-mom should always have her babies on Mother's Day. (And my husband, b/c he's a hermit.) This year I woke up with a raging migraine (my old NS said it best "You get your head cut open that many times, you're gonna get headaches." LOL) so I missed out. However, this afternoon the sister and I were able to meet up for pedicures and gossip. No yummy breakfast though. And Mom and I have plans for some one-on-one time tomorrow. (Which is better because I like having Mom all to myself. LOL) Spending the day by myself, hiding under the covers, curled up in a ball, gave me lots of time to think though...

Mother's Day is always a bit bittersweet for me because, as a stepmom of kids whose mother is still in the picture, I'm always left feeling a bit... adrift. On the one hand, I feel like I deserve as much appreciation as their "real" mom because I'm the one who gets them off to school every day, helps with homework, takes them to the doctor.... Okay, I've changed my mind, I deserve "MORE APPRECIATION" damnit! ;) Because I do these things without thought, it's just what I should be doing. (Does that make sense?) I don't consider it "not my responsibility". They are my kids, so I take care of them. That's how it works. That's what a mom does.

On the other hand.... I get to see them every day. I'm the one that first hears about the awesome grade they got on a really hard test, or the cool idea they had for building the most creative and unusual items out of cardboard boxes and masking tape. (LOL) I know more about what they are into right now, what foods they all of a sudden love or hate, who their current friends are. So, I feel guilty about being jealous because she doesn't get this.  So, it's okay that she gets Mother's Day; I get every other day.

Wednesday, May 9, 2012

a little tiny bit off subject

~NF Awareness Month~ (sorta kinda)

If you've been doing your daily reading and taking notes, you'll understand which part of this story is NF2 related.

I took the boys to the Rec Plex (think YMCA only fancy-ish) to go swimming in the indoor "leisure pool". Its cool- there is a "lazy river" (ummm more like a bend in a lazy river), a water slide and a whirlpool/vortex plus some random spaces for just paddling around. Next to the leisure pool is an Olympic size swimming pool that can be sectioned off into various zones such as swim lanes, diving area (they have spring boards and platforms), and open swim areas. And surrounding everything is... tiled flooring. Oh, yay! Not so much. The swim lanes were closed at the end closest to the ladies locker room b/c of high school water polo matches. And I thought I would be feeling uncomfortable for people to see me in my swimsuit! But mostly I felt uncomfortable trying to not actually look anywhere so no one would think I was checking these scrawny kids out. Anyway. Since the floors are tiled (and wet!) and the open swim lanes were half a football field away, I decided I'd better play it safe and stick to the kiddi...ahem "leisure" pool. It kinda sucked. I wish that I could be stable enough to walk on wet tile, edging past teams of teenage boys in speedos (I assume- I didn't look, swear!) without worrying about falling. Because the only thing more embarassing than falling in front of a crowd of people is trying to get up in front of a crowd of people.

Now I'm going to bed because all of that exercise- not the swimming, the NOT looking- has just tuckered me out.

Monday, May 7, 2012

and the beat goes on

I read like 6 books this weekend- true story. Not big, complicated 1000 page books. Just fun stuff. (Oh and thanks to my niecy babysitting gig I got to watch the first 3 episodes of True Blood Season 4.... 4.1? Are they really splitting it up into 2... ummm mini-seasons?) Anyway. So, this was a fun, relaxed, lazy as sin weekend. But, NF never takes the weekend off so here we go...

~NF Awareness Month~

Here's the deal with NF (2 or otherwise)- its a totally non-racist, non-biased, equal opportunity employeer. It doesn't care if you're a guy or a girl, black or white, gay or straight. It affects one in 25,000 males and females of all races and ethnic groups. And, like I mentioned before, 50% of cases are genetic mutations, no warning. (like moi.) For this reason there are a couple "levels" for diagnosing NF2:

Confirmed (definite) NF2:
Presumptive (probable) NF2:
In addition, individuals with the following clinical features should be evaluated for NF2:
  • Unilateral VS plus at least two of any of the following: meningioma, glioma, schwannoma, juvenile posterior subcapsular lenticular opacities/juvenile cortical cataract
  • Multiple meningiomas (2 or more) plus unilateral VS or any two of the following: glioma, schwannoma, juvenile posterior subcapsular lenticular opacities/juvenile cortical cataract
So, how was I confirmed to be a mutant? When I had the MRI senior year I was immediately a "confirmed" case because my mega-brain was sporting some new additions. The BVS- bilateral vestibular schwannomas. In plain talk that means one tiny tumor on the right side at the hearing/balance nerve center, just hanging out. And one even tinier tumor on the left side wreaking havoc (hence, the "I don't think I can hear as well (technically, at all) out of my left ear").  Because, contrary to popular belief (in this case at least), size doesn't matter. ;)

*Remind me to talk about THIS tomorrow- I got a good story!

Saturday, May 5, 2012

it's a big thing but it's not everything

No NF2 talk today. It's important to spread the word and  create awareness- but I think it's just as important to not get lost in it. So, today is all about spending time with the husband, refereeing the hellions and just living. And tonight, Auntie Tracey saves the day- I get to watch my Pun'kin so Seester and the honey-in-law can have a date. :) Too bad the Peanut went with the Grandys for the weekend- loves my little munchkins.

Friday, May 4, 2012

so, where was i?

~NF Awareness Month, day 4~

Yes, I know I missed day 3. So, sue me. Now, where was I? First tumor at 13, check. Totally ignorant about NF2, check. Okay. When I was a senior in high school I had my annual check up before school started and when my doctor asked "Anything else you want to tell me about?" I remembered to tell her oh, yeah, I don't think I can hear as well out of my left ear as my right. She checked to make sure nothing was blocking it (you know, like ear wax; it wasn't) then sent me to see that awesome child neurologist again. Another round of MRIs and a hastily scheduled visit later- scarily reminiscent of 5 years earlier- and we heard the words Neurofibromatosis Type 2 for the first time.

Neurofibromatosis 2 (NF 2) is distinguished by multiple brain and spinal tumors that can cause deafness, severe balance problems, facial nerve paralysis, spinal cord compression, swallowing difficulties or eye function complications.

Imagine learning that for the first time at age 17, when you're just starting your senior year of high school. It's supposed to be senior parties, college decisions, prom. Not surgery, almost 3 months of school missed (including a fancy dress up dance), complete and total change of my view of my future, new closer to home (and doctors) college picked out. I thought my life was over. This was back in 1993. We didnt even have a computer yet! Our information sources on NF2 were severely limited. Now, almost 20 years later- I'm still walking, talking, eating, seeing. Yes, I'm deaf (in both ears) now; I stumble around like a drunk at times; I have one eye that's permanently "asleep", but I'm still me. Still Tracey.

Wednesday, May 2, 2012

i love surprises! except this one....

~NF Awareness Month, day 2~

When I was in 8th grade I suddenly started getting these bad headaches and throwing up a lot. Of course, since the throwing up was mostly in the mornings (before school) and there had been really no warning, my mom thought I was faking to get out of school. Okay, once or twice I can see, but almost every day for a month? Even I wouldn't try to get away with that. But whatever. How did I finally convince my mom to take me to the doctor, you ask? Easy- I threw up in the middle of the hall at school. Pretty convincing. We did the round of doctors, meet a great child neurologist who upon seeing the MRI of my brain said "We need to check you into the hospital NOW." (I kinda wish he'd said STAT but apparently that just happens on tv.) There was a huge (bigger than a golf ball, smaller than a basketball, but hey- it was in my HEAD so golf ball is huge, ok?) tumor in the back of my brain causing the fluid to not drain properly. Thus, bad headaches and throwing up. Told you I wasn't faking, Mom! :)
Long story short (this time) two weeks in the hospital and all I got was a lousy haircut and a bad-ass scar. Oh, and, you know, no more tumor.
That was my first experience with NF2. Only we didn't know it was NF2 because we had never heard of it. .Approximately 50% of those affected with Neurofibromatosis have a prior family history of NF. However, the other 50% of cases are the result of spontaneous genetic mutation. So, I'm a mutant. Professor X never came to invite me to his school though and the only power I seem to have developed is the power to grow tumors pretty much everywhere. Mostly on the inside though, so you wouldn't even know it to look at me.

Tuesday, May 1, 2012

farewell sweet girl

I've been following Avery's Bucket List since about the first day *she* started posting it. She is quite loquacious for 5 months old. This morning I checked in, like I do every day, to see the heartbreaking news that Avery succumbed to complications from SMA yesterday. She touched so many hearts around the world and she was smiling until the very end. Here's a smile for you, baby girl. :)

how do you pronounce neurofibromatosis...

Well, in my case it's pronounced NF2. Or, if you want to sound smarticle, it's pronounced neuro- fibroma- tosis. Type 2. May is National NF awareness so I'm going to be sharing some facts and figures and personal stories all month to help spread the word.
There is more than one kind  of NF but I'm just going to talk about the kind I have. Because it's my blog. And I'm lazy. I've mentioned the deaf thing before but never really gone into how or why. Well, this is how and why:

Neurofibromatosis Type 2 (NF2) is a genetic disorder in which affected patients develop bilateral tumors of the balance nerve called vestibular schwannomas (VS). Patients with NF2 also develop other intracranial and spinal tumors, as well as cataracts and skin tumors. Although these tumors are generally benign and non-cancerous, they can lead to a variety of severe health problems, including difficulties with hearing, vision, speech, swallowing, balance, walking, and critical thinking. Without treatment, these tumors can cause brainstem compression and can ultimately lead to death. Currently, treatment options include tumor excision using microscopic surgery techniques, gamma knife radiosurgery, or radiation therapy. Observation of these tumors as they grow is also another option. Both tumor growth and treatment can lead to a variety of devastating consequences, such as deafness, blindness, and imbalance. For these reasons, ideal management of NF2 is challenging, complex, and controversial.

I stole that from . There is more info there if you are interested. But that's the gist of it.
She left out the most important treatment option though, in my opinion. Recently, huge strides have been made in oncology-based treatments.  In other words, DRUGS, baby. At a symposium last year one of the speakers (a doctor with extensive NF experience) said the future of treatment for NF2 is going to be more and more chemo-based and less about surgical approaches. Fine with me! :)