Addendum: The Elementary Dating Scale

While riding in the car today I revisited the subject of the levels of a relationship with Brynn (see the post prior to this one for the original story). This was a mistake in that I was driving and so had to remain facing forward (in other words, I couldn't look away and laugh). Honestly, try to imagine yourself hearing a 10 year old explain this to you in all seriousness, and try not to chuckle...

Level 1: "He asks you out."
Level 2: "You do stuff together. You know like hang out and go do things."
Level 3: "Kissing on the lips."
Level 4: "Getting married."
Level 5: "Having sex."
Level 6: "Having a family together."

So the next time you feel like you're in a relationship that's stalled out, just know it's probably because you've been trapped at a 3.5 for ages.

Here's a handy pocket guide I made up for you:

"He already tried to take it to a number three," or Lessons in Elementary Dating

Don't let the title fool you, I'm not taking a dating 101 class. I'm talking about dating at the elementary school level. Brynn has never not been into boys. To be fair, she might get that from me. Regardless, there's never been a moment in her life where boys were repulsive or had cooties.

Recently Brynn decided to finally accept the overtures of a certain boy who has been pursuing her for two years now. That's right folks, at 10 years old. He'll have long conversations on the phone with her. He's taken her to the movies (with his family of course). He even invited her to a fireworks extravaganza in his backyard (put on by Rozzis!). Brynn's been stubborn but he's been patient. She finally relented a couple weeks ago though.

Brynn prefers a several page manifesto when confessing crushes.

So tonight, when she announced to me that she thinks she's going to break up with this boy, my heart went out to him a little bit. He's tried SO hard. But I know it's Brynn's decision. I wanted to encourage her to be fair to him though and not hurt his feelings. I warned her to be careful not to lose a friend.

Her retort caught me off guard. By way of defending her decision she told me, "He's already tried to take it to number three." For a moment I got a lump in my throat and a wave of panic swept over me. What in the world was "number three"? I remembered my "bases" from late middle and early high school, but surely no. Not in elementary school. Thankfully when I asked, Brynn explained (in her most you're-so-out-of-touch tone) that three is kissing on the lips. And she (supposedly) told him no.

The whole episode has left me wondering...what's a one and a two? Hand-holding? Declaring yourselves boyfriend and girlfriend? Exchanging friendship bracelets? Also, how high does this numbering system go? By the end of high school my friends and I had imagined the baseball metaphor to its breaking point (not that we made use of all the imagined designations mind you). Is the elementary school system just a ladder with some undefined endpoint and uncertain number of levels? Or is there only, say, a four and a five (whatever those might be)? I'll have to find out more tomorrow, perhaps over an afternoon hot chocolate. In the meantime I'm going to leave Brynn to handle her love life as she sees fit...with a little motherly advice sprinkled here and there as we go.

My $15,000+ Day... or Treatment Day 1

Yesterday was my first day of treatment. Everything went smoothly. Brynn arrived for her first day of school on time and without a hitch. I made it to my appointment almost on time. Despite having a minor infection we were still able to proceed with the first round of Adcetris.

The treatment itself started with pre-meds. Tylenol, Benadryl (to prevent an allergic reaction), a light steroid, and anti-nausea medication. The Benadryl knocked me out almost immediately. I fought my falling eyelids as hard as I could, but eventually had to tell my friend (who drove me to and from my appointment) that I was going to have to nap.

I did wake up long enough to joke with my nurse about giving me my new car. Unfortunately I wasn't really getting a new vehicle, just its cost equivalent in medication. It turns out that each of my treatments require 3 vials of Adcetris, and each vial markets for about $5,000. That means when he brought this tiny little bag in and plugged it into my IV, I began the process of absorbing $15,000 into my system.

Too bad it doesn't have a street value.

I can't complain though. It's been over 24 hours and I'm not experiencing any side effects. I did sleep for several hours yesterday, but that was just to wear off the Benadryl. I'm not nauseous, I don't feel cruddy, I'm still eating whatever I want. Actually, I feel pretty normal. We'll see over the next few days, but I'm feeling good about how my body is handling it so far.

Stem Cell Transplants 101: What's the plan?

I realize that for most people the news that "I'm getting a stem cell transplant" is about as meaningful as me saying "I'm having my naruffula collar removed" (which is to say that it sounds concerning, but doesn't mean a lot). This post is meant to serve as a sort of introduction for non-medically oriented friends and family, who would like to understand what this process will entail.

For starters, the stem cell transplant is not the first step in the process. I have to go through preparatory treatments (and those have to be working) before we move forward with the transplant itself. In the past, these treatments have always come in the form of chemotherapy. (Definition: Chemotherapy is basically poison that is most effective against cells that reproduce quickly, like cancer cells, hair cells, and the cells that line the interior of your mouth. That's why many people on chemo lose their hair and/or get mouth sores. But it is poison, so it makes people nauseous and feel cruddy). For my first transplant (Dec '09) I tried one prep regimen of chemo that ended up not being totally effective. We had to switch to a different sort of chemo, which shrank my cancer some but not completely. That was enough to move forward with the first transplant though.

Luckily for me there is a new treatment for Hodgkin's patients who have relapsed after an autologous stem cell transplant. (Definition: Autologous stem cell transplants are transplants where a patient's own stem cells are used, like my first transplant. These are less dangerous than Allogeneic transplants, which are transplants where the patient receives a donor's stem cells, like my upcoming transplant). The new drug that is available for treatment is called adcetris and it's only been available for the last 2-3 months. It was fast-tracked through the FDA's drug approval process after showing promising results in clinical trials (30% of patients had their cancer shrink down to nothing, another 42% had their cancer shrink somewhat). The great thing about adcetris (in addition to having good results) is that it is NOT chemo. This drug is a monoclonal antibody. (Definition of Monoclonal antibody: Your guess is as good as mine). So I'm not sure exactly what that means, but it's not poison and my doctor assures me that it will be the easiest treatment regimen I've been on so far. Since it's not chemo, I shouldn't have all the cruddy side effects associated with chemo. I'll get the drug once every three weeks. It only takes 1 hour to administer the drug, and then I'm finished until 3 weeks later when I go in for another dose. I'm also excited because this leisurely treatment schedule means the doctor probably will allow me to go through it without getting a port again. (Definition: A "port," or more correctly a portacath, is a small device that sits under one's skin and provides easy access to a vein. It feels like a MicroMachine lodged under your skin. Doctors and nurses can stick a "needle" in it, which Brynn calls a "nail," to administer medicine or fluids, or to draw blood. It's handy if you need to get stuck a lot, but for me it probably won't be worth it this time around).

My port, version 1.0 (in use). I'm hoping to avoid the 2.0 install.

We'll do 3 rounds of the adcetris (so for 9 weeks total) and then we'll do another PET/CT scan. (Definition: A PET/CT scan is an imaging scan that helps the doctors see where the cancer is and if it is growing or spreading. They inject radioactive sugar into my blood, which is mostly absorbed by rapidly reproducing cells, like cancer. Other kinds of cells that reproduce rapidly can absorb the sugar, like scar tissue, which leads to a false positive. Then I'm put in a machine that takes thousands of images of my body and shows where radiation is coming from. Since the cancer cells absorbed the sugar, and thus the radioactivity, they show up on the scan).

(Option 1) If that PET/CT shows continued growth of the cancer, we'll scrap the adcetris and try a chemo prep regimen. (Option 2) If the cancer has disappeared, we'll move forward with the transplant. (Option 3) If the PET/CT indicates that the cancer is shrinking but is still there, we'll continue with additional rounds of the adcetris and then reassess with another PET/CT scan at a future date.

Once we've shrunk the cancer down it will be time to move on to the stem cell transplant itself. Even if the adcetris eliminates the cancer altogether, the Hodgkin's might come back without the stem cell transplant. The transplant starts with a huge, HUGE dose of chemo. A dose SO huge, it completely kills my entire immune system. The hope is that the chemo kills off any remnants of the cancer, wipes my immune system clean, and we start with a blank slate. The problem with that, is that without an immune system I'd be a goner. Seriously, if we took no other steps after the "killer" chemo, I would die. This is where the stem cells come in. My body still hasn't fully recovered from the first transplant, so it's not making enough of its own stem cells for me to provide my own for the transplant. That's why I need a donor. So after the "killer" chemo has done its job and I have zero immunity to any germ in the world, I will receive the gift of life (aka. stem cells) from a donor. (Note: It is the chemo that might, fingers crossed, cure the cancer. The stem cells just repair my body after the chemo has devastated it).

***Revision 3/14/12: In an allogeneic transplant the above description isn't quite right. In my case I will receive an intermediate dose of chemo before my transplant which will take my immune system down very low. I will receive donor cells and grow a new immune system (which will be the donor's immune system). The hope is that the new immune system recognizes any future cancer growths as abnormalities and attacks them. So the part above about the killer chemo being what eliminates the cancer is wrong. In an allogeneic transplant we're counting on the donor's immune system to keep any future cancer in check.***

Those stem cells will be infused into my body just like I was getting a blood transfusion. It's really kind of anti-climactic, and the nurses say everyone smells like creamed corn on the day of their transplant. Those stem cells are the building blocks for a brand new immune system for my body. But it takes a long time for that new system to be built and begin to work. In the interim, the danger is that I might get sick. With no immune system my body is entirely susceptible to any germ that comes near it. I have no defenses. The doctors can treat me with antibiotics, but often times that's not enough. Many people who receive transplants die from infections that they couldn't overcome.

One of the bags of my stem cells. Looks unexciting, saved my life.

From beginning to end the transplant itself, which is all spent on one hallway of the hospital, takes anywhere from three and a half to six weeks. Possibly longer with complications. Patients are terribly bored and many are depressed. Children under 14 aren't allowed on the floor at all, ever, for any reason. During my first transplant that meant I did not see Brynn for over 4 weeks, which included Christmas. I watched her open her presents via Skype. It was tough, but I knew that getting that transplant was the only chance I had of celebrating many, many more Christmases with her. I'm disappointed that it failed, but I'm committed to doing whatever is necessary to be around for many more Christmases. If that means another transplant, then that's the plan.

**Disclaimer: I am not a doctor (obviously). This post is full of my best attempt to understand my own treatment and share that understanding with others. Please do not confuse this with a real medical explanation from a medical professional.

Rediagnosis: Cancer

Last night I was walking around in the Dollar Tree when my cell phone lit up with a call from my doctor. "Oh good" I thought, I'd been waiting to get the official word about my recent biopsy for almost a week. The surgeon had reassured me that the mass didn't look cancerous to him, and so I'd not worried much more about it.

My doc: "So how did the biopsy go?"

Me: "THAT'S WHAT I WAS HOPING YOU WERE CALLING TO TELL ME!"

Doc: "ha ha. No, the actual procedure. How's your incision?"

Me: "It was routine. I'm no more sore than is to be expected. How are my results?"

Doc: "Well, there were Hodgkin's cells in the biopsy."

Me: "You've *got* to be kidding me."

Doc: "I wish I was..."

And so I sat down the cheapie dollar scissors I was toting around. Walked out to my car in a haze. And had a discussion with my oncologist about what happens now.

So what happens now?

First, I move back to northern Kentucky. Second, I start a new treatment regimen, meant to get me ready for transplant. Third, I have another stem cell transplant, this time using a donor's stem cells. Finally, I kick cancer's ass...again (again). Easy Peasie.

I'm sure I'll relate more details as we go, but those are the basics. Here's a terrifying chart, to convey the gravity of the situation:

Overall survival of 118 patients from date of relapse after autologous stem cell transplantation for relapsed or refractory Hodgkin lymphoma.

It's like the giant hour glass the wicked witch of the west flips to let Dorothy know when she'll meet her doom, except less pretty.

There's a new treatment though (only out 2 months) that I'll be doing to prepare for the transplant. Hopefully that changes the statistics as they now stand.

If any of you would like to help me, here's what I need:

Please go to www.bethematch.org and sign up to be a stem cell donor. It's free to join the registry. They send you a cotton swab and some easy directions and once you send it back you could save a life. Very few people ever get called (1 in 540 according to a friend). Those who do get called usually have no costs associated with donating. The procedure itself (as I understand it) is the same one they used to collect my stem cells, which was just like giving blood but took a bit longer. Of the 10,000 people (many of them children) who need a donor every year, only 50% find a match. Please, please sign up to possibly save a life. A life like mine.

In more practical matters, I will need help with the move. Loading in Tallahassee, unloading somewhere in northern Kentucky. If anyone has a lead on nice but affordable places for rent in Burlington, I'd love to know.

If other things come up I'll let everyone know. For now though, hugs, distractions, and support are warmly welcomed.

We've Got the Beat, We've Got the Beat, We've...Forgotten Our Dance Moves

I am supposed to be at a conference. A national conference. The premier national conference in my academic field. In San Francisco. I am supposed to be networking, discussing, and engaging. And, of course, drinking, sight seeing, and spending time with friends. I am not supposed to be in Tallahassee. But I am.

Today was Brynn's hip-hop recital at the local gymnastics center. The dance classes there aren't a huge deal, but it was important to her. So important that when I told her I was going to miss it, she burst out in tears and cried for a solid five minutes. I've never missed one of her dance recitals (or music recitals for that matter). And where other kids have aunts and uncles, grandmas and grandpas, even dads; here in Tallahassee Brynn has me. Sure we have lots of amazing friends, but Brynn just couldn't fathom the thought of me missing her star performance.

So I stayed in town. We've had a friend over for dinner and a puzzle. Brynn made brownies. We watched a movie together. It's been nice.

Today was the big day, Brynn's hip-hop debut. She had skinny pants, funky shoes, and a high ponytail. Recital time.

Brynn, in an attempt to look "thug," throws peace signs rather than gang signs.

The girls started out strong. They've been rehearsing for weeks and the first three quarters of the song saw the class dancing almost in sync. I'm not sure exactly why things fell apart for the girls, but as you can see here, the entire class forgets the moves to the last quarter of the song.

You can see them all look helplessly at each other and then scurry off in a mix of relief and embarrassment when the song comes to a merciful end. Brynn told me that they were extra disappointed because they all thought they wouldn't get medals at the end (that everyone got for participating!) since they'd messed up.

All in all though, Brynn stood up in front of a couple hundred people and performed a dance that she's been practicing for weeks. She looked for me, and found me, supporting her in the crowd. Afterward we spent time together taking silly pictures and then she picked out the biggest, brightest bouquet of neon daisies a girl could want.

I miss my friends at the conference, but I wouldn't have missed something this important to Brynn for all the sights in San Francisco.

Fair Play

Today Brynn and I ventured to the North Florida Fair for fried dough, freak shows, and all you can ride collapsible whirling machines. The fair did not disappoint.

For $.50 a piece Brynn checked out "The World's Smallest Woman" and "The World's Smallest Horse." She pleaded for more change to take a gander at "The World's Largest Rat" and "Spider Woman with Eight Legs--Answers Your Questions!" but there are only so many quarters I'm willing to dole out for that sort of thing.

Before setting foot on any of the "unlimited" rides I'd paid $20 for Brynn to have access to, she asked for a $5 camel ride, a $5 surfing simulator attempt, a $5 giant hamster ball on water ride, and a $5 trampoline experience. Once I told her she could choose between any of the $5 diversions or her fried dough later, she promptly re-directed and found the regular fair rides.

Flight of the Fifth Graders

After a long day of riding everything from bumper cars to fun houses, it was finally time for fried dough. You can't eat too many fried foods too early in the day or else unlimited spinning rides turn into a really bad idea.

Going...

Elephant ears are our favorite fair-fried dough. You can't always find them, but they're infinitely better than funnel cake as far as we're concerned. Brynn went with powdered sugar AND cinnamon sugar (what could I say, it's only once [or twice] a year).

Going...

The timing was perfect. The night was beginning to cool down and our hands were a bit chilled. Giant, fresh, warm elephant ears warmed our hands and our insides.

Gone.

Brynn ended up covered in powdered sugar. I ended up feeling like maybe I should have worked up slowly to so much fried food (I also had a corn dog for dinner). Overall though, as long as fair food only works its way into my diet once (or twice) a year, I think it's an essential ingredient in personal happiness.

Many of you know how much I love fairs, my home town county fair especially, but all fairs everywhere as well. There's something magical about how time, responsibility, and calorie counting can be suspended for a few hours. I wasn't nestled at my computer working on a paper. She wasn't running around the house doing chores. Neither of us was eating a single tuft of broccoli. We could run, ride, play, and munch to our heart's content (or at least until we got a belly ache). And in the midst of so many people, all having a good time, we could walk around together and just enjoy each other's company. Sharing all those things, and just a general love for fairs, with Brynn is so special to me. Every year in my fair photos she looks exponentially more grown up than she did just one elephant ear ago. But at least I know that some part of both of us will always be a kid at heart.