Sunday, January 29, 2012

A warning, and probably TMI in the explanation...

In the interest of full disclosure, folks, I want to let you know that the tone and/or content here at Razzzberries is about to shift. Now, I don't want to scare you off - and I'm going to work really hard on not becoming one of those bloggers who "over share" (we all know one - or more - of them and that's not who I want to be), but for more than a handful of reasons, I've decided that I need to use my blog as a vehicle for getting a story - and some emotions - out of me and onto paper.

There are a lot of reasons that I've decided to be a little more honest, and a lot more raw in how I talk about what's happening in my life. Here are a few of them:

Writing helps me reframe what I'm thinking and how I'm feeling. When I have to be able to put something into words, I have to process it. This helps me. A lot.

I'm afraid that, in all of my efforts to be positive (and not grumpy) about the health struggles I've dealt with in the past two years, I've given a few people a rather "Pollyanna" view of me. I mean, as cute as Hayley Mills was and all... I am so not Pollyanna. I think it's important to find joy in your life, to recognize that happiness is a choice and see the blessings that are always there. I also feel that it's important to feel what is hard, to honor frustration and anger and fear, so you can work through what is hard and move on. All emotions are important, and I need to be better at letting the people who love me know what I'm feeling, so they'll know where I am and how they can help me.

I've decided, at long last, what I want to write a book about. (Anyone who's known me for five minutes knows that I've always wanted to write a book. I haven't ever actually done it because I've never been able to decide what subject matter to use, what to write about.) I decided in the fall that I was going to write a book about cancer, about having lived through it and come out better, stronger and happier than I ever thought I could be. (And, hello, I like to think that I was pretty darn strong and happy before the cancer cursed/blessed my life. Multiple times.) The only hitch was, I couldn't remember a whole heck of a lot about some of the time periods involved. I really struggled with that, because in order to write effectively, I felt that I needed to remember - and talk about - some of the truly dark stuff. ... Not that I want to write a dark and twisty book, nor do I want to focus only on what has been hard, but I feel like I need to honor how truly difficult and painful it has been. ... I want to write a book that other cancer patients/survivors can read and think "Yes! Yes, I have felt that way!", and I want the friends and family members of cancer patients to be able to read what I have written and know, in some small way, what their loved one has felt or is going through. I don't want my book to be negative, or unnecessarily heavy, but I need it to be honest and authentic, and I feel that, from the perspective of honoring how incredibly difficult it is to have the cancer - from diagnosis to surgery and treatments and side-effects and beyond - I need to write as I'm experiencing things. I need to write while memories and emotions are fresh. Welcome to one of the biggest reasons this blogspot is about to change.

Here are some ways that things around here are shifting, and why:

I've disabled the ability for readers to comment. Not that I don't love hearing what my readers have to say (I love you, and I enjoy your feedback). The reason I've disabled the comment function is that there are some things that I'm going to write that are going to be hard to read, and I don't want anyone to feel like they have to say something in response. That doesn't mean that I won't talk about what I post. I will. I want to. On a lot of levels, I need to. Call me, email me, text me. Contact me if I write something that you want to talk about, and I'll be happy to talk about it. There are some things that will be hard or heavy and I don't want anyone to feel like they have to comment, so I'm changing the functionality on my blog to give me the outlet I need without the distraction that comments can be.

I'm going to start being a lot more open than I have been. (I can hear a good dozen of you rolling your eyes and groaning at this statement. Could I have possibly been more open about the constipation - and other digestive system - issues that radiation and multiple surgeries caused? No, I don't think I could have been more open there.) The reason I've decided to go a little more "open and sharing" is that I think I've done a lot of the people who love me a disservice in not being honest with how incredibly difficult this has been - every time I've done it. I've had a few friends say things like "Seeing you like this makes it seem so real" or "Wow, the stress is getting to you" when they ask me how I'm doing and get an honest - and often emotional - response. Folks, it's been real every time. The pain, the frustration, the fear and the anger have always been there. Just because I feel that it's important not to fully invest in those feelings and let them own me doesn't mean that I don't feel them. I can't say strongly enough that I feel that it's incredibly important to focus on the positive and look for the good in our lives. I also feel that the Lord gave us a range of emotions for a reason, and that it's imperative that we allow ourselves to feel all of those emotions, to process them, so we can use what is hard in our lives for good and for growth. So, I'm going to be a lot more honest. Be ready. Please don't be scared (or horrified), but be ready.

My writing style may change a little. I'm thinking a little less rambly and a little more like a journal entry. I want my voice to still be my voice, but I'm pretty sure we can all agree that sometimes I get off-topic. (How long is this post now, anyway? I shudder at the word count.) I may repeat some points or stories that some (if not most) of you already know from the first two times through for the sake of a narrative. The reason for this is that I'm going to use my blog as a vehicle to get this story out of me while feelings are fresh and before my memory is fogged by narcotics, pain and/or time.

This blogspot-is-about-to-change warning having been issued, I want to say that I'm still me. I want this corner of the www to be more honest, but I also want the content to be humorous and a fun thing to read. I'm bound and determined to stay positive and hopeful. I do not want to turn this blog into a cancer-riddled war zone littered with horror stories that will make people feel sorry for me.

At the end of the day, I need to write more honestly because calling a spade a spade helps me cope, which will help me heal. I need to talk about some of the truly difficult territory that I've navigated and am headed right back into, because the nasty stuff is part of the story. I need to write this because I have a voice and I need to use it. Also, in the rich fantasyland that is my imagination, I like to think that by the time I'm done with treatments, some sweet editor in a far off land will have heard of my blog and want to publish my book and I can go on cancer survivor book tour and maybe have a movie made of my life in which Nathan Fillion will play the doctor who fell in love with me as he was curing my cancer. (So what if that's an unrealistic fantasy mix of Julie and Julia and Black Heels to Tractor Wheels? A girl can dream.)

As always, thanks to my friends and family for supporting me in everything I do - from eating a bucket of buttered popcorn for dinner because it makes me happy to letting me bare my soul online because it's what I need to do. I wouldn't be able to handle my life without the people in it. You all make everything more fun and more worthwhile and I love you.

Sunday, January 22, 2012

The pretzel party

Last Saturday, we had a half-of-the-family party (others were invited, but only 3 of us sibs and the parentals were able to make it).

I'd taken a plate of goodies over to Spence and Brea's at Christmas. Connor (one of the funniest kids I've ever known in my whole life) was enchanted with the carmel/chocolate dipped pretzel rods and asked if I would teach him how to make them. As I am a woman who will never say no to a child who wants to spend quality time with her (also, have I ever been known to turn down the opportunity to dip something in chocolate?), the pretzel party was born.

Timing is interesting. This party was planned the week of Christmas. I'd been thinking that the Saturday before last would be a better fit for me, but last Saturday was better for Brea - and since we were basically crashing her house, what worked best for her was the way to go. Little did I know, when this party was planned, that what I would be wanting (and needing) last Saturday was some good old-fashioned family fun - with plenty of dipping chocolate to go around.

We found out last Thursday that I have a new tumor. Brea texted me on Friday to ask if I was still up for the party. My answer? "ABSOLUTELY!" I wanted to be able to have some fun with the kids. I wanted them to know that even if I do have cancer, I'm still Aunt Laurie and I'm still A Good Time. (Yeah, in caps. Like that's a proper noun.) I needed the energy that I get from spending time with family, the warm fuzzies that only a hug from a child can give me ... and the sugar rush that comes of eating all things chocolate-dipped-and/or-covered for an entire afternoon.

It was a practically perfect day, in every way. We laughed, we cried, we watched the kids chase the rabbit. We talked, we worked, and we played in the kitchen. The kids jumped on the trampoline, climbed the tether ball post and rode bikes. The weather was great, the company was fantastic. It was an amazing day, and exactly what I'd wanted it to be.

Two of my nephews (Kirk and Connor, the 8 and 7 yr olds) huddled up to the table when no one else was around and asked me questions. "Does it hurt to have cancer?" "Are you scared?" "Will you die?" And I was able to answer them. "No, not yet. Right now my tumor is really little so it's not hurting me at all. They'll give me medicine that will make me sick, and that might hurt. And I might have to have another operation, and that will hurt. But right now, no, the cancer doesn't hurt at all." "A little bit, because I don't know what's going to happen to my body - but sometimes we have to do hard or scary things. I'll be okay." "No, I don't think so. I'll be sick, really sick, for a while. But I really don't think I'll die." - We agreed that it would be really sad if I died, because I am super fun and I did teach them how to make chocolate covered pretzels, and I promised to do my best to stay alive. I was really happy that my nephews, who are cousins - not brothers, felt like they could ask me questions about the cancer. I've been the kid who wanted to know if her aunt would die, and I've been grateful my whole life that when she was sick, she would talk to me about what was happening in her body. I love my nieces and nephews. Those sweet kids are the six best things in my life, and I'm so glad we'd already had this party planned before my world tipped on its axis.

Again, timing is an amazing thing. Spending time with family was exactly what I needed last weekend, and it was exactly what I got. In spades, it was what I got. Gosh, I love how things work out sometimes!

Here are some fun pics from the day:

Brea, me and Spencer. (I love how my brothers make me look short. Looooove it!)



We had four bowls of chocolate going at a time. The kids could choose pretzel rods, over-sized sourdough pretzels or the cute little mini's.



We had M&M's, Nerds, crushed candy cane, nuts and no less than ten different kinds of sprinkles to choose from. We worked like crazy, mad, chocolate-dipping fiends for about 10 minutes ... and then sent the kids outside to play while the chocolate hardened so they could eat what they'd made.



Here are Seth, Kirk and Russell, dipping pretzels to their hearts' content.



Hazel, grooving on the pink sprinkles...



Hillary, enjoying a white chocolate pretzel rod she'd made with her own hands.



Connor, who is a candy-loving fool and a bit of a creative genius when it came to seeing how much sugar he could lump onto one pretzel.



My sweet nieces are girls after my own heart. It was just them and me at the table at this point, and when Hillary asked me if she could have a pretzel from the big bowl, I told her she could have as many as she wanted. She looked at me like it was Christmas, and then dug right in. (The way I eat candy with wild abandon? It's genetic.) Check these girls out:



Man, I love my family! (Even more than I love chocolate, which is A LOT.) I love timing. I love how things always seem to work out, even (or especially) when I don't know how they will. I love knowing that my brothers and their families are close by - both literally and metaphorically - and that they're only a phone call away. I'm grateful for parents who'd drive 3 hours for a party and then stay for a sleepover to get in more time with my brothers and me. I'm grateful for family, for chocolate, and for memories. I'm grateful for those Mary Poppins ("practically perfect") days that come along every once in a while, but mostly I'm grateful for the people I get to share them with.

Saturday, January 21, 2012

In the wee small hours of the morning

It's well past 1:00 AM and I'm sitting here, singing a song from the Sleepless in Seattle soundtrack to myself. True story.

I'm exhausted, yet I can't asleep. My body's so tired that it hurts, but my brain's too wired to fall asleep. It won't shut down.

So I sit here, in front of the TV, watching an episode of Castle for the I-don't-even-know-how-many-th-time.

This is my thought pattern (besides the singing to myself routine, which should be enough of a sign that I'm a little loo-loo, but since when do I not over share, esp when I'm posting something in the actual middle of the night?):

I'm sure glad that Kathy U. sent me a cake this week.

I'm even more glad that tomorrow's Saturday and I don't have to go to work in the morning. (It's frustrating when I get like this on a weekend night. It's infinitely worse when I can't fall asleep and I know that I have to get up and go to work the next day.)

I've read every post on every blog of everyone I know.

If I look at one more cooking blog, I'm going to have to get up and make something buttery and bacony and delicious. Or maybe a cake. ... Except I still have half a bundt cake to get through, so that's probably not a good idea.

Facebook is at a standstill. (And I'm not someone who generally checks FB over and over again. But still... it's at a standstill, and I know this, because I've checked it three times in the last hour between blog-hopping.)

It's too late to call anyone in the continental US, and it's too early to call England.

Hopefully, February will be an easier (and more restful) month. I figure that getting more info from the doctor on the 30th will only help my restless mind calm the heck down.

The good news is that I'm not a hysterical mess. Usually, this late at night, when I'm this tired, I can't help but cry. But today was a good day without a single breakdown. I'm grateful for that, and glad that even in the middle of the night, stone-cold tired, I'm not sad, scared or upset enough to be crying.

This is my life, people. Thankfully, it's not like this every night. (This week, this is only the second time it's happened. For that, I am grateful.)

Friday, January 20, 2012

Candy, poetry, flowers AND a new pet!

I came home from work today to a plethora of goodies on my doorstep. (Thank you, Curry family!)

I had these lovely candies. Hello, we all know how much I love chocolate, especially fancy chocolate! These have a Trader Joe's sticker on the bottom of them, so I know they'll be delicious. (Kimmie's such a good shopper!) And besides, how cool is it to have a chocolate mosaic? Super cool. (Probably not worth getting cancer for. But still, it's cool.)



Stanton and Noelle both colored me pictures (I'm super impressed with how inside-the-lines they can color!), and Kimmie wrote me a poem:



Buah-ha-ha... I FREAKING LOVE THE POEM!

*In her defense, Kimmie really isn't one to be a swearer, and she went on to write in her card that she doesn't usually make up poems with bleeped out cuss words, but she know it would make me smile. It sure did make me smile. It made me laugh - out loud!

And they left me a little bouquet of spring flowers that I just LOVE! (In a different way than how I loved the poem, but maybe even more than I loved the chocolate.)



One one of the leaves (look to the lower left) is a pet snail that Stanton and Noelle wanted me to have - and name Pretzel. I don't know how long he'll last on that little leaf, but as long as he promises not to get down off the flowers and move into my kitchen, Pretzel can stay.

I love chocolate. I love semi-swearing poetry. I love flowers. (I do not love snails.) I love my friends!

Not something I'm bragging about...

Last night, I told you the super dramatic story about how I found out that I have spotty and collapsed lungs (that are not actually spotty and/or collapsed - at least, not in a tragic way).



Today, I will show them to you. Behold:




You can see them down in the lower right quadrant (look at my fancy word use), which is actually my left lung. (I know this, because I was the one lying down when they took this picture. I'd be happy to re-enact that for you any time. I love to lie down. Lying down's my favorite.)


But I digress...


Anyhoo... those are my spotty and collapsed lungs that no longer scare me. Phew!


Now this picture just makes me laugh. Out loud. Why? Because, hello, look at my breasts. Do you see them falling off my body and onto the table?


Hilarious!


For years, I've told people that I would be unrecognizable without a bra on. Now you all know that it's true. Gravity plays mean tricks on bodies, people.


I'm thinking that maybe I should upload this photo to Ye Olde Dating Site. I can hear the dialogue it would spark "Here's my heart, you can see that it's nice and healthy - this is my collar bone - down here are my spotty lungs (but don't worry about the spots, my doctor doesn't) - this is my spine - oh, and up here, hanging 3 inches off to the side, are my breasts." Suuuuuuper sexy, right?


Don't be jealous of me and my body that this CT so clearly outlines, folks. Don't be jealous...

Thursday, January 19, 2012

Define "spotty" and "collapsed" for me, please...

Here's how today went...

This morning I got a phone call from my doctor's office to let me know that my CT results were in. Nonchalantly, the assistant told me that there were some spots on my lungs, but they didn't look like inclusions and were more likely a result of a collapsed lung, so there wasn't anything to worry about. This was my thought process:

What?

Wait...

What?!

There are spots on my lungs?! And that's awesome that there aren't inclusions (whatever those are), but ... uh .... I HAVE A COLLAPSED LUNG?!?!

I got right out of my chair at my desk and walked outside (because, you know, finding out that you have spotty and/or collapsed lungs at work is not the kind of thing that you want to burst into flames over whilst in a cubicle). I asked how they could be sure these spots are fine. She, again, told me there weren't inclusions. (Again, the word inclusions. I was thinking that I needed to ask my friend Google what that was.) She said something - AGAIN - about a collapsed lung. When I asked how I could have had a lung collapse and not know it, she kind of laughed and told me that was a good question ... and she didn't really know the answer. She was totally calm and collected and stated that the report was good, that the doctor wasn't worried, so even though she couldn't really explain what it all meant, she was confident that I was fine.

I asked if there was anything I could do. (I've never had spotty/collapsed lungs before and didn't know if there was a certain protocol I'm supposed to follow now.) She said there wasn't really much I could do but wait.

She also gave me the good (golden!) news that the doctor had found a specialist at MD Anderson (praises be!), but hadn't had a chance to talk to him and formally refer me yet. She told me to keep my appt with them on the 30th, by then there would be more of a plan in place. I asked again if there was anything I could/should do on my end. She asked what I wanted to do. I told her that I didn't know what to do - but I feel helpless, that last week I was told there's a spot on my retroperitoneal tissue again and today I found out there are spots on my lungs and I feel like I have to do something ... anything.

And then my voice cracked. And the dam broke.

And then she said she was sorry, really sorry, but right now all we can do is wait.

Again, with the waiting game. Argh.

I thanked her for the call, and for her time. I hung up and held it together long enough to walk 20 feet to the bench outside the business complex and I sat down and cried for a good 3 minutes, and then I called my mom and let her know what I'd been told. We cried about the spots and about the collapsed lung and about the whole stupid thing. And then I picked the pieces up, put myself back together and went back in to the bank.

I sat down at my desk and asked my friend Google what inclusions were. He told me, and then I felt sick to my stomach (and had to repeatedly tell myself that those are NOT what I had and that I was okay). And then I asked Google what a collapsed lung was, and if that's a common occurrence. (A collapsed lung, btw, is a pneumothorx - and appears to always be deadly. Sometimes immediately so. Sometimes it's a lingering issue. But death seemed to be always on its way. Awesome.) As I sat there, wondering how in the world I was living and breathing with this collapsed lung, wondering where it came from and how in the world I was going to cope, I realized that I was, suddenly, very short of breath. (That's a symptom of pneumothorax, in case you were wondering.) I sat there for a while, focusing on breathing, trying to remember when it started to hurt to breath. Did I have tightness in my chest all along, or was it only after having read way too much on WebMD? Did the anxiety cause the issue, or was it my recently discovered collapsed lung that was making it almost impossible to get in a deep breath? ... Which came first, the chicken or the egg?

You can imagine, I am sure. I was having a freakout. I didn't know what to do. Reading more online was not an option, because it was making me more nervous by the minute... but I needed information and I didn't know where else to go, who to ask, or what to do.

And then I remembered that my cousin, Greg, is a pulmonologist. (That's right. I have a cousin who's a lung doctor. Miracle of miracles!)

So I texted him. I said "Doctor cousin, this is cancer cousin. I need help." - and he texted me right back. And then we talked for almost half an hour, and he talked me off the tight-chested, I-cannot-breath-and-I'm-not-entirely-sure-why ledge. Bless his soul for both talking like a doctor (he explained that it wasn't an actual collapsed lung - he could tell, because I was talking, and I wouldn't be able to do that with an actual collapsed lung - but possibly lung damage done by radiation treatments that was just now showing up) and for talking like my cousin (I asked if he would mind reading/translating my radiologist's report for me and he told me to send it to him - he's in Idaho - by carrier pigeon, because he'd seen that on White Collar and thought it was cool).

Greg gave me information that my oncologist hadn't been able to. He told me that, while he does see lung cancer in patients who have sarcoma recurrences, those are for the most part leiomyosarcoma tumors and not liposarcomas. (Never have I been more grateful for my fatty tissue tumors than I have been today.) He made me laugh. He acknowledged that I'm looking at a disease and some treatment options that are scary, but he let me be human. He taught me some things about cancer. He reminded me what I already know about my family.

I was able to pick up a copy of my CT report and scans after work and I sent him copies of the partial report when I got home. (Via text - not carrier pigeon, sadly.) We talked for another half hour as he broke down exactly what the report meant, and he explained that the "spots" the doctor's assistant had referred to were most likely caused by gravity (I'd been lying on my back when the CT was done and gravity had made my lungs "collapse" or fall in, which results in some shaded areas). Tomorrow I will mail him the CD so he can look at all of the pictures and make sure I'm okay. He explained different ways CT's can be done to help doctors know what they're looking at and assured me that once I get into the hands of a specialist, they'll know what to do and what to look for and I'll be okay.

It turns out that the phone call I got this morning wasn't really so far off base. She just couldn't explain what she meant behind the words "spots" and "collapsed". Greg could. And now I can sleep. (And, you know, breathe.)

I'm so grateful for my cousins, for my relationships with them. I'm so grateful that not only do I know someone who's in exactly the right field to be able to answer my kooky lung questions, he's someone I can just call and talk to. I love that I can send a "this is your cancer cousin" text and I get an immediate response. Greg is more than a doctor, and he's more than a cousin - he's a friend. And he helped me today, oh... ever so much. He comforted me and he gave me hope and I love him.

It never ceases to amaze me that the Lord puts exactly the right people in my life to give me the answers I need - at exactly the time I need them.

Does it suck to have the cancer? Yes. But does it rock that I have a support system that's both far-flung and super tight? Absolutely!

Tonight, I am grateful for the opportunity to see the hand of the Lord in my life. Again. I am grateful for timing, for modern medicine, for communication and relationships that make life easier - and a lot more fun.

Tuesday, January 17, 2012

Cancer sucks, cake doesn't



I got a little surprise at work today - a delivery from Nothing Bundt Cakes (one of my true, higher-caloric loves) - courtesy of my sweet friend, Kathy U., with a personalized card bearing the message of "Cancer sucks, cake doesn't!!!"

I love chocolate cake. I looooove cream cheese icing!

I love my friend who sent me a cake from 600 miles away to let me know she was thinking about me.

(And I didn't share with the folks at work. Not one little bit. ... I mean, I offered to share with a few people (the three who'd seen the delivery come in), but they didn't take me up on my first offer to cut them a piece and I sure didn't press the point.)

I hate cancer, but I love cake. (And Kathy U.)

The End.

Sunday, January 15, 2012

Here we go... Again.

For those of you who may not have been keeping track, I was due for my quatro-annual (yeah, I'm making up words for something I do four times a year) MRI and visit to the oncologist this month. I had the MRI on the 3rd. My follow-up with the oncologist was on the 12th. And...

I'm so sorry to have to report that my guts have gone and grown another tumor. (Honestly. After the very stern talk I had with them this time last year, I'd have thought they'd have learned their lesson, but no.)

The MRI showed a two centimeter sized "spot" growing just below my left kidney. (Sound familiar? I swear, sometimes I think my life is on a constant replay loop. The bright side? At least it's not 22.5 lbs. I mean, really, if I'm gonna grow a deja vu tumor, copy-catting a little guy is the way to go.)

Here's the plan of attack: medication. Probably a little bit of a chemo cocktail. (Awesome.) Obviously, the plan of cutting tumors out as they grow is a good one, as that gets the buggers out of me - but, at this rate, that would be the third tumor removal surgery in less than two years. And while I am incredibly grateful that I happen to get the kind of cancer that can generally just be cut right out of me and not the kind that spreads through my blood like wildfire, having multiple surgeries every year is not how I want to live my life. It is also not how my oncologist wants me to live my life. While the surgery does get rid of the tumors, there seems to be a deeper issue here, is what I'm saying. An issue that my doctors would like to get to the bottom of, if possible.

This is how it is slated (as of now) to go down:

1) CT on my chest/lungs - STAT (it's scheduled for tomorrow morning, actually). This is because, when sarcomas recur, they have a high statistic of causing lung cancer as a secondary condition. ... Now, I'm not particularly worried about that, because I've had liposarcomas twice now (three times, if you count this new little guy) and I'm at a zero count for lung cancer. But... I will do what my doctors tell me to do. A girl can't be too careful. And besides, CT's don't give me the heebie-jeebies like MRI's do.

2) While the doc is waiting for the results of the CT to come in, he'll be reaching out to specialists in the area to see where my best fit will be for a referral. As much as I do love (and I do LOVE) that sweet man, at this point, I need a sarcoma specialist - so he's gonna pass me along the line. We're hoping that a former colleague of his at the new MD Anderson Cancer Center will be able to take me. He can't recommend her or this clinic highly enough, and he's hopeful that they'll have something for me, as "they specialize in hard to treat/hard to cure cancers". (I love that he talks like this - I also love that I can now refer to myself as "hard to treat/hard to cure". Sick and twisted, but true.)

MD Anderson is, right now, my preferred option because I so love their tagline of "The future of hope is here", and I like that they line through the word cancer, like it doesn't exist anymore. I have hope, and I want cancer to be eradicated from the very face of the planet, so I feel like this clinic and I are on the same team.

If, after he talks to his friend there, he finds that they don't currently have something they can fit me into, we'll most likely go back to nice folks at TGen Research. You may remember how, last year, I went and interviewed for participation in a clinical trial that was scheduled to start in May 2011 aimed at treating various forms of sarcoma tumors. At the time, I didn't qualify (because I wasn't currently packing a tumor) - but now I do qualify (and I have the MRI film with a little white spot on it to prove it). The second option is more of a clinical trial option. I'm not going to lie, I'd prefer the first option (read: cross your fingers, rub your rosary, bow your head and pray that MD Anderson will work out), simply because I'd rather take medicine that someone else has taken than truly be a guinea pig. But if, after doing some research, being a guinea pig is the best option for me right now, I'll do it.

I've said it before and I'm sure I'll say it again: I hate the cancer. I hate it with a deep, dark passion and I will do whatever I can do to fight it. That means I will fight it in my own body. It also means that I will let doctors look at my dna, code my tumors and try to find a way to make THIS kind of cancer stop, if that's what they want/need to do. I. Will. Do. Whatever. I. Can. Do. To. Beat. This.

So, to recap: I'd prefer MD Anderson ... but I'll totally be a TGen guinea pig if that looks like it'll be a better option. We'll see - and of course I'll keep you posted.

And for those of you who may be wondering what will happen if this little tumor of mine starts to grow like gangbusters, I'll go ahead and proceed to the next step.

3) I'll have another MRI in 3-4 weeks to chart the growth of said tumor. They aren't going to biopsy it right now, because chances are it just is what it is and they want to try something that isn't surgery first. The hope is that, with some molecular restructuring (fancy words for what will most likely be chemotherapy), they'll be able to shrink the tumor, or at least stop it from getting bigger. The ultimate hope is that, with treatments aimed specifically at this TYPE of tumor, they'll be able to change my body - so whatever it is that makes me grow these stupid things can be re-programmed. It is fairly safe to assume that the tumor will almost double in size in the 3-4 weeks that it will take to get to the point of the next MRI (that's what it did last year in the same time frame). Liposarcomas grow quickly, but it's small enough that doubling size shouldn't impact my health at all. I've been told that they will monitor the growth and changes, and if things start to go off a predictable chart, they'll go in and operate and remove the tumor just like they have before.

And that's really all I know right now. 1) Get a CT. 2) My current primary oncologist is trying to find me a new home. 3) I'll have an MRI in a month or so to see how things have changed in there.

Other than those three key points, it's another game of Hurry Up and Wait.

Welcome to my life.

The good news is, I've played this game before (with slightly altered rules, but I have played it), so I can wait. Currently, my next follow-up with my doctor is scheduled for the 30th. ... I don't think it'll be that long before I see him, but that's what's on the books. (He needs the CT results and a plan for where he'll put me, and I don't think either of those will take any longer than through the end of this week.)

Once I know where my new home will be, I'll make appointments to go in and talk to the new doctor(s) and I'll have more information. This post was purely to put information out there.

So, it's back. I kind of hate that, but I can't change it, so I'm working with it.

I am, as always, grateful that the tumors I grow have nothing to do with my lifestyle. There is no correlation between my getting cancer and what I put into my body, or any choices I've made in my past. I'm so incredibly grateful that, while this is, to date, the hugest (and officially most often recurring) trial of my life, I have no guilt associated with the condition of my health. That has been such a blessing.

I am grateful for parents who raised me to find the blessings in times of trial, for siblings and sisters-in-law who I know would move heaven and earth for me if they could, for extended family who love me like ... well, like I'm not actually extended family ... for friends who ask me to call them at 4:00 in the morning because they know I can't sleep right now. I'm grateful for all of the people who have already facebooked, texted, called or emailed to ask what they can do. I am the luckiest cancer patient I know. (Said with an eye roll, but it's totally a true thing.)

I posted something earlier this month in regards to hoping that 2012 would be a pain free year. It won't be, this I know. But what I also know is that the harder this stupid disease gets, the more love I feel. I can't explain it, I can't quantify it, but I know that's what happens - because I've lived through it. Twice. I have my reading public (and a whole lot of other people who love me, but don't love the www) to thank for that. So, thank you. Thank you in advance for reading what I have to say and for loving me so much that it blows my freaking mind.

Saturday, January 7, 2012

Things that make me grateful

You know, how sometimes you don't realize how great life is? ... And don't you dare tell me you don't forget to be grateful, because I won't believe you.

Anyway, sometimes (quite often, really) I forget how great things are in my life. Like, I forget that I need to be grateful that I don't ever crash and burn on the freeway ... until I'm stuck in traffic on the 101 because there have been four (FOUR) major accidents and they have to clear the road, so it becomes a parking lot. And then I'm left sitting there, in complete and utter gridlock faced with the reality that it's not so bad to be stuck in traffic when the alternative is to be stuck in a smashed car. I mean, really. It's shameful that I forget to be grateful every time I get somewhere without incident until I see that someone else... well... had an incident.

I forget to be grateful for good health until I have a runny nose. I go days, weeks - and usually months, even - without a runny nose, and I forget how awesome it is NOT to have one, until suddenly I do. Having a runny nose makes me grumpy. It also makes me aware of all the days of the year that I don't have one, and I vow every time that I'm gonna be more grateful for good health as soon as that runny nose is gone.

Those are only two examples of situations I find myself in that give me clarity and help me realize/remember that I need to look for (and find) the good in my life more often. I could give you a lot more real life examples, but I'm pretty sure you get that gist. The bottom line is that there is a lot of awesomeness in my life - and one the things I've decided to be better about this year is seeing the awesome.

Speaking of which, can I just take a moment and tell you how TOTALLY AWESOME it is that Blue Bell still comes in a half gallon?!



Hello, Awesome, I think I might love you! (And yes, I just referred to the ice cream by Awesome, like it's a proper noun and that's its name. Don't judge.)

I swear, the carton of Moo-llennium Crunch takes up a good third of my freezer space. (Listen, it's a small freezer.) But ya know what? I'm fine with that. Besides, it's not like it's gonna last very long anyway...

And in accordance with my goal to see the blessings in my life, I'd like to say that I'm grateful for a whole half gallon carton of goodness in my freezer. ... And I didn't even have to wade through the 1.75 quarts of all other brands out there to appreciate the half gallon. That's making some progress, folks, and it's not even half way through January!

Wednesday, January 4, 2012

It's a whole new year!

It's 2012. How crazy is that? I swear, when I write it, I feel a little like I'm living in a sci-fi movie, and I don't know what to do about that.

It's a whole new year. Nothing's the same, yet nothing has changed. I can't put my finger on it. I can't articulate it well (which is a shame, seeing as I know a whole heck of a lot of words and can't seem to string a sentence together that expresses how this new year feels to me). All I keep thinking is that everything's the same, yet ... it isn't the same. At all.

I'm curious to see where 2012 takes me. I'm full of trepidation and yet ... hope.

When 2010 ended, I was happy to see it go. I thought that 2011 would, surely, be an easier year for me. (Insert eye roll and raucous laughter here.) ... And it's not like I think I have the power to jinx myself or anything like that, but I'm a little leery of saying, or even thinking, anything along the lines of how 2012 will, surely, be easier than 2011 was. Not that 2011 was a bust. It wasn't, by a long shot. It was hard, but it was worth it. I felt more joy, more happiness, than I'd ever thought I could. (And I'd always considered myself a pretty happy girl.) But it was a hard year. A year I don't want to repeat.

To paraphrase a quote I heard once upon a time, way back in High School English, before I had any idea what this might mean: The amount of joy we feel is, literally, commensurate to the amount of pain we have felt. 2011, literally, brought me more pain than I'd ever seen before. Commensurately, it also brought me more joy than I ever could have imagined.

Here's to hoping that 2012 will be more than a sci-fi hallucination. Here's to hoping that it's a continuation of the joy, and that 2011 put a cap on the pain.

I am truly hopeful that this will be my best year ever. I look forward to the people I'll meet, to the experiences I'll have, to the love that I know I'll feel.

I love my life. I always have. But every year, I love it (and the people in it) even more.

Happy New Year, folks! Let's make it a doozy!