According to Plan...Well, this Latest Plan Anyways

It's come to my attention that when you keep a blog that's at least in part about you having cancer, people start to worry when it isn't updated for a couple months.

Sorry about that.

Things have been going the way we anticipated when I had my most recent bad scan in October. I did take the two additional Adcetris treatments. Those did take the cancer back down to undetectable amounts. I had a PET scan after the second treatment and it was clean, which again is what we thought would happen. The Adcetris has been amazing at temporarily eliminating the cancer, but it isn't going to keep it away long term.

Since that good scan I've moved forward with two more Adcetris treatments just for good measure (for a total of four since my October scan). I finished my (hopefully) last Adcetris treatment this past Friday. Sadly the Adcetris did make most of my brand-new post-transplant hair fall out. I hadn't had any hair loss with the Adcetris before transplant but I suppose since my body was already in a weakened state after the transplant it didn't take much to send those new hairs packing. Still, no cancer in my body > peach fuzz on my head.

The doctor has taken me off my original immuno-suppressants (tachrolimus and Cellcept) and put me on a different one called sirolimus. We are trying to reduce my dosage of that drug as well, but my GvH refuses to be completely controlled, so we're backing off very slowly. Put more simply, I need to stop taking these pills but when I do my skin gets itchy and scaly and my G.I. tract revolts.

With any luck we'll continue to reduce the immuno-suppressants to the point I can come off them altogether. Then my new, transplanted, German-donated immune system can full on attack any cancer that tries to come back. I won't have another scan until February, so until then cancer worries are on cruise control.

I'm going to take the time to revel in a few holidays...and a couple of birthdays. I'll wrap presents, dance to 80's music, ring in a new year, celebrate a special 30th birthday, and right around the time of my scan I'll turn 32. (I was 27 when I was diagnosed.) Maybe in my spare time I'll grow a little bit of hair.

"Cancer Wars, Episode 4: The Hodgkin's Menace"; or "It's Baaaaack"

Click here for the whole opening crawl: http://www.starwars.com/play/online-activities/crawl-creator/index.jsp?cs=uufqk8fsrv

Sometimes, especially after a trilogy, additional sequels are not welcomed.

That's certainly the case right now for me. After three bouts with cancer, and many more different kinds of treatments, I had hoped to have finished my Hodgkin's lymphoma saga. But no. We're all going to be treated to an unwanted new episode.

Yesterday I received the results from my most recent PET/CT scan. New cancerous lymph nodes are showing up. One area we had hoped was residual or inactive has increased in intensity (which means it's showing more cancerous activity). This is all bad news.

My doctor has a plan though. Up until now I've been taking a significant amount of immuno-suppresant medications to try and keep the graft versus host disease (GvH) under control. Though I'm still struggling with GvH, we're going to reduce the drugs keeping my shiny new immune system at bay and hope that it attacks the cancer at full force. (This also involves hoping that it doesn't attack my skin, mouth, eyes, or gastrointestinal system, but if it does there are alternative ways to treat that GvH.)

I'll also do another two rounds of Adcetris treatment, which will ideally quash what new bits of cancer have appeared. That is the same treatment I did in order to prepare for my most recent stem cell transplant (click here to read more about my first Adcetris treatment). It was insanely expensive, but had almost no side effects and completely eliminated the cancer. I'm hoping for a repeat performance.

So to sum up: dark and cancerous forces are again at work, but this battle is far from over.

When She Tries

As we were leaving a cross country race last week Brynn told me that she doesn't care about trying to get medals anymore. This was possibly spurred by not winning any medals yet this season. Of course I told her that I didn't care about what place she finished in or if she won a medal, as long as she tried her very best.

Then she said it. And it knocked me off my feet.

"I don't like running and I'm NOT going to do my best!"

Whoa there little lady. There are a great many things you can say to your mother, but "I will not try" is not one of them. For a moment I just looked at her in shock and disbelief. She had said it aloud, to my face, with no trace of trepidation or remorse.

Needless to say a brief but heated conversation ensued about expectations. She was still not willing to say she'd do her best at her next meet.

The frustrating part is, when Brynn *tries* she can do some really amazing things.

Last night Brynn needed to draw a picture for a fundraiser they're doing at school. (You parents know the one: "Here's a free tiny magnet/sticker of your child's artwork. Please buy $100+ of additional items with your precious offspring's talent plastered on it! Aprons! Coffee mugs! Bongs! If you'll pay money for it, we'll put that picture on ANYTHING!")

Well she devoted almost the whole night to it.

A shining moment when the overachiever genes beat back the slacker genes.

Now if I can just find a way to channel that effort into other activities, I'll be the happiest mom around.

Back to School, Back to Business

Today was Brynn's first day in the sixth grade. Much to her disappointment her new school continues to group 6th grade in with the elementary school, and she had been looking forward to officially being a middle schooler.

I knew she was at least a little nervous this morning because she asked me to walk inside with her. We've reached the stage where 85% of the time I'm an embarrassment, so her willingness to be seen with me was a sign that something wasn't sitting right with her. It could have been the fact that she'd forgotten how to get to her classroom or it could have just been first day jitters, but either way I was happy to escort her inside.

At first she stuck close by me, but then we bumped into the only other sixth grader Brynn knows at her new school (our neighbor). Immediately Brynn shifted her attention to her friend, but subtly looked over her shoulder and indicated she still wanted me to tag along. This lasted until we ended up in the cafeteria and the girls sat down at a table full of potential new friends. When I leaned over to tell Brynn where I'd be picking her up in the afternoon she looked at me like I had 3 heads. Like the lamest 3 headed monster ever. Time to go.

Thank goodness for school dress codes. I won't miss this summer's short-shorts.

This afternoon when I pulled up to the curb to pick Brynn up I was happy to see that she looked cheerful. Of course I asked how her first day was. Without missing a beat she replied, "It was good. There are two cute boys in my class."

Well, I'm glad all the important things fell into place.

A Perfect PET

It's not unusual for me to know the results of my PET/CT scans long before I sit down with my doctor. The scan is performed at the hospital and, once the results are ready, a summary is faxed to my doctor. Because I'm the patient though, I can go directly to the hospital and request a copy of the results. When there are several days between my scan and my doctor appointment, I'm prone to getting the summary early because the curiosity (and worry) are overwhelming.

This round was different though. My scan was on a Friday morning and my doctor appointment was on Monday morning, so there was no time for me to sneakily find out my results on my own. I'd have to wait for the doctor to deliver the news. By the time he came into the room I was ready to burst, certain I was going to simply blurt out "WAS IT OKAY?!?" with a crazed look in my eye. He beat me to the blurting things out though.

Dr: (clearly irritated): You're not getting scans there any more.

Me: (somewhat thrown off): Okay?

Dr: They shouldn't just put anything that's wrong in the report, they should outline everything they see. You're just not going back there for any more scans!

Me: (sort of laughing at his irritation, but now also alarmed that he referred to something "wrong" in the report): Okay?

Dr: (picking up on my alarm): Oh, nothing's wrong, but this report is awful!

Me: (giant sigh of relief) Oh thank goodness!

So that's how I found out that my PET/CT results showed NO CANCER, as an aside to my doctor's annoyance at the quality of the scan report.

Did you hear that folks? One hundred days out from receiving my donor's stem cells, my body is still not re-growing any cancer!

Day 100, or Look Ma, No Tails!

Friday marked the 100th day since I received my donor's stem cells (which is technically considered the day of the transplant). Since then I've lost my hair, had complications from graft vs. host disease (GvH), swollen up from steroids, and been on doctor's restrictions (aka house arrest). But I've also gotten the GvH under control (mostly), slowly reduced my steroid dose, and continued eating, breathing, and spending time with Brynn. It hasn't been the easiest hundred days, but it's been one hundred days I might not have otherwise seen.

To mark the occasion, I had a PET/CT scan, which will show whether the cancer is regrowing or not, AND I had my "line" taken out. I won't know the results of the scan until next week, so we can all wait in (sc)anticipation. Getting the line out was a long awaited moment of relief though. For those of you who aren't familiar, the line I'm referring to was my triple lumen Hickman catheter. It was "installed" in my chest the day I checked into the hospital for the transplant...all the way back in April. Since then I've had what amounts to an open wound just next to my shoulder! It's like a friendly invitation to germs, "Just come right on in, the blood flow is fine." Thanks to a great team of nurses who changed my dressing (which I called my "sticker") and flushed out the line twice a week, I was able to stave off getting an infection. But it meant careful showering, daily attentiveness, not yanking the thing out accidentally (it was over a foot long!), and always having "tails" poking under my shirts.

Having the line installed was a big deal. I was anesthetized, taken back to surgery, and billed out the wazoo. So I was surprised when I overheard a nurse telling another patient not to worry, because even a monkey could take out these lines. I was even more surprised when I was sent, not to surgery, but just to my surgeon's office to have it removed. He snipped a couple of stitches, numbed the area just around the line itself, and slowly pulled it out. That was it. It took me ten times as long to drive home from his office as it did to actually take the line out. Don't worry though, I'm sure I'll still get billed out the wazoo. It was well worth it though. When the surgeon saw me looking at the line laying limply on his instrument tray, he warned me that I couldn't take it with me. I told him I had no such intention and that if I never see another Hickman catheter it'll be too soon.

The future home of yet another visible-when-I-wear-a-strapless-dress scar.

Day 100 also marks the loosening of my restrictions. I still need to avoid crowds and germs, but I can go more places and eat more things. My doctor suggested carry-out instead of dine-in, but either is a big improvement over having to cook every night for months. And of course I'm going to be smart about where I go and what I do. While I very much want to just get back to "normal," I know that taking any ill-advised risks could put me back in the hospital or worse. My immune system is still a puny weakling. That means it's  easier to avoid germy situations and stay healthy than it is to get better. So I'll continue to follow most of my restrictions, but that doesn't mean I won't be hitting the road. After 100 days of house arrest, a road trip might be just what the doctor* ordered.

(*metaphorically only, my actual doctor would have me live in a bubble if at all reasonable)

Obamacare in Action...Already!

Today my insurance sent me...(wait for it)...a CHECK! Technically it's Brynn's insurance, which is a private policy I took out for her through HumanaOne years ago. She's been covered under this policy since 2005, and the premiums have crept up each year, to the point where I now pay $267/month just for Brynn's insurance.

Now I understand how insurance works (trust me on this one, because to be honest I wish I had a lot less experience dealing with insurance). I know that while you're healthy some of your premium goes to cover those who are sick and then if you get sick (like I did) others' premiums go to paying your bills. I also realize that insurance companies have employees and operating costs and yadda yadda yadda.

But in 2011 Humana reported a *profit* of $1,099,400,000. That's just profit. And they were ranked #79 in the list of America's largest corporations (source for profit and rank: CNN Money).

Thanks to the new Affordable Healthcare Act (aka Obamacare), I just got a tiny bit of that back.

Since Brynn is an unusually healthy child, we usually only go to the doctor and dentist for well visits. Of course there's the occasional sneeze, sniffle, or ache, but usually no more than an extra visit or two a year. So the $3,200 I pay annually for her insurance did seem a little steep, but no one wants to see their child un- or under insured.

The health care legislation also thought this was a little pricey for someone who uses their insurance so little. It contains an 80/20 rule, which basically says 80% of the premium I pay to Humana must then be spent on medical care. They can use the other 20% for overhead, but 80% has to actually cover medical care.

So when I opened the letter from Humana today I actually did a little happy dance. Here's the exact wording:

If for some reason you can't read that in the picture it says "Enclosed is your health insurance premium rebate check which is required by the Affordable Care Act -- health care reform -- and the Medical Loss Ratio provision. The purpose of this requirement is to lower the cost of health care coverage."

This is the first face of Obamacare I've experienced in person, and so far I like it just as much as I thought I would.

Inflatable Me

"Claire. It's a family name."
"It's a fat girl's name"
"I'm not fat."
"Well not at present, but I can see you really pushing maximum density. See I'm not sure if you know this, but there are two kinds of fat people: there's fat people that were born to be fat, and there's fat people that were once thin but they became fat, so when you look at 'em you can sorta see that thin person inside."


Don't get me wrong. I'm not invoking The Breakfast Club trying to imply that I've ever been thin. I haven't. Two very loving grandparents and Little Debbie collaborated to be sure I was always kind of a plump kid. (Mmmm...oatmeal creme pies).

This quote has seemed so relevant to me over the past few weeks because what I didn't realize is that steroids are apparently what can push a person just past maximum density and make them explode. Seemingly overnight I went from looking like me, to looking like movie me in a fat suit! My face did anyway, and I guess that's more make-up than a fat suit, but you get the idea. Do you remember when Inspector Gadget would shout "Go, go gadget coat!" and (eventually) his little trench coat would *POOF* out into a balloon? That's what happened...to my neck and cheeks.

I'd been forewarned. Dr. Essell told me I might see "some" swelling in my face. Of course at that point the GvH was so bad he could have told me that the steroids were going to cause my hair to grow back plaid and I'd have totally taken them anyway. "Some" doesn't really cover it though. I started describing it to people as my face turning into a pumpkin shape. A quick internet search revealed that this condition is informally called "moon face" and rightfully so, my features now float in a tiny space of my inflated face just like the man in the moon.

It's odd because the rest of my body hasn't really changed, or if it has I'm actually a little slimmer (this assessment based on how often I'm required to wear a belt with pants). You'd think, or I did, that if steroids made you "bulk up" it would be all over, not in one small region. I should be careful what I say though...I hear there's also a phenomenon called "apple belly" and I have no desire to find out what that's about. Having a 400lb head on a 165lb body will have to be my style for now.

I've been really self-conscious about the whole thing too. I try to warn people before they see me in person and I've refrained from taking many pictures (more or less posting them on facebook!) But I've decided since this is part of the process of getting better, I'd share it. Plus I realized I can't avoid the whole world until I deflate. Eventually my face will return to normal, but my steroid dose is at 25mg, we're only going down by 5mg each week, my GvH already seems to be flaring up, and facial shrinking apparently doesn't even *begin* until I'm under 10mg...and it's a long process. So maybe by Christmas I'll not look like a bald, clean shaven Santa?

In the meantime, "Go, go double chin!"

13 Hours of Sleep

There's really nothing exciting about yesterday...except that I slept for 13 hours of it. Technically, those beautiful hours stretched into this morning, but who cares about details when you've just woken up.

One of the (many,many) side effects of the steroid I'm taking is that it inhibits sleeping. On a good night I sleep 5-6 hours, on a bad one, 2 hours. Then I simply lay there, knowing I need more rest, unable to fall back asleep. Very, very frustrated. As a result I refuse to take naps, because who knows, I might not fall asleep that night at all.

In a funny twist though, the trick to me capturing such a long nights sleep (even if it was off and on) is that I have a bit of an infection. I've started on meds for it, but those will take a few days to kick in. To top it off I had a splitting headache since Thursday that taking even a tramadol (pain pill) didn't phase. By the time I threw up I decided that was it. This called for a nap. And the nap turned into the most prized hours of sleep I've gotten since my transplant. Phew. My body needed that.

Aside from this little infection, things have been going really well. The GvH isn't bothering my eyes or mouth and my skin has cleared up from all the blotchiness. Something (even the doc isn't entirely sure) is causing me to have neuropathy (tingling in my fingertips) but that doesn't bother me much, just feels unusual.The steroids make my hands shake (to quote my most tactful friend "You look like you have Parkinson's!). They've also caused "some" facial swelling, which the doctor had warned me about. "Some" turns out to be a condition unofficially called moon face, and it's making my head look like a giant pumpkin. Even my cheeks are taut from the swelling.

We are decreasing the steroid dose, but slowly so the GvH doesn't flare. This week I'm down to 30mg a day (which is a huge drop from the 160 I started at) and we'll go down to 20mg next Friday. After that we'll reduce by 5mg each week. The goal is to get me off them completely, but if the GvH acts up then we'll have to keep them on the roster for awhile.

I'll continue to be on tight restrictions until at least the end of July, possibly longer. In the meantime I've been doing a lot of organizing. The kind that you tell yourself, "one day, when I have some time, I'm going to..." File cabinets beware, I have a paper shredder and I'm not afraid to use it! I've also had a few visitors come by, which has been wonderful. And Brynn and I even threw a "Very Merry Un-Birthday" party for her one day (I'll blog about that soon). So while medical house arrest isn't the most fun I've ever had, I'm making the best of it and feeling productive. 

Nothing Says Success like Being Reminded You Could be Dead

Today was an unqualified success. Yesterday I went in for a PET/CT (which shows if there's any cancer growth). I'm already over 30 days out from receiving my donor cells, so it was time to run a check and see how things were going. Results were already back today, and clean as a whistle. No cancer on the scan.

Plus my graft vs. host (GvH) is starting to clear up even more. My hands chest and head are starting to look normal again and I'm able to do things like open bottles (which was much too painful just a week ago). My mouth is still quite raw inside, but it gets a wee bit better every day. I still have eye irritation, but I think that will abate once my steroids are reduced.

Which is why I was thrilled when the doctor told me that we're reducing my dose of steroids again. I'm on a metric ton of them, so it's a slow and trying process to come off of them. But starting out at 80mgs of steroids twice a day means I have a long way to go. Now I'm down to 2 doses of 60mgs a day. The lessened dose will make my muscles (and apparently ankles) weak, but I'm anxious to be on the lower doses. Steroids have some nasty side effects and I'd like to avoid as many of them as possible.

This is *most* of tomorrow's pills. An additional 7 and that's it.

 So everything at today's visit was looking up. The doctor even gave me a few days off from seeing him in the office (back on Friday afternoon). Last week I was there Mon - Sat...every single early morning. So this little vacation is quite the reprieve. Of course, if anything flares back up, it's back to daily morning visits for me. For today though, I'm happily on the upswing.

And to put things even further into perspective, my doctor offhandedly mentioned that if we hadn't treated the GvH, I'd be dead. Right now. No question. The steroids and the immuno-suppressants that I whine about taking are the only reason I get to curl up on my couch with my baby girl tonight and leisurely watch a movie. That beats the hell out of dead.

Coming Full Circle

So my graft vs. host seems to want to hang around. Everytime it starts to ease up in one place, it crops up somewhere new and seemingly worse (like all over the inside of my mouth and throat). We're not just going to roll over and let it do its worst though. Today the doctor added another immuno-suppresant called Cellcept to my drug list. Along with another immuno-suppressant (Prograf), these two meds should help beat the graft back down into submission...or at least hopefully get it to quit attacking my skin, mouth, stomach, etc.

There's an ironic twist to this new drug though. All medicines that I'm aware of are required to list the side effects of the drug. Things like nausea, blurry vision, constipation/diarrhea, etc. are all just par for the course. Today's new med has an extra special warning though...

"WARNING: Mycophenolate [Cellcept] decreases the body's ability to protect against illness and infection, and may also increase your risk of developing lymph node tumors (lymphoma) and other types of tumors. ...Notify your doctor immediately if you develop signs of infection or other symptoms such as weight loss, night sweats, enlarged lymph nodes, or skin growths."

Did you catch that? My new med CAN CAUSE LYMPHOMA.

And that, folks, is coming full circle.

Give me 5 on my GvH covered hand for irony in the highest degree.

My Own Worst Enemy: Graft vs. Host Edition

Do you ever have days where you feel like your body just won't cooperate with you? Maybe when you're especially tired or feeling sick? Well my body is hosting a full-on attack on...well...my body.

I've developed graft vs host (GvH), which happens when the donor's immune system (now my new immune system, aka the graft) doesn't recognize my body (the host) and attacks it. Ideally I would develop *just* enough GvH so that the new immune system will recognize any new cancer as foreign and attack it, but not so much as to cause all these other cruddy symptoms. GvH can cause everything from dry itchy eyes, to dry mouth, to skin rashes, to gastrointestinal problems, to organ malfunction, even to death.

So naturally the doctors are taking my outbreak very seriously. They started me on 80mg of steroids a day (a lot) and when that didn't immediately work they DOUBLED the dose to 160mg a day! The first night I wasn't sure I was going to be able to sleep a wink, the steroids had me buzzing around getting all sorts of things accomplished. I'm getting the hang of it now (sleeping that is) but the steroids still haven't made much of a dent in my skin rash. Today I was told that unless my skin shows marked improvement by Monday, they might have to check me back in the hospital to get super, epic IV steroids three times a day. I'd rather not, so I'm cheering for a quick weekend recovery. Plus, it would be great if every bit of my skin above my knees would quit itching.

You can see a bit of rash on my face & neck here. I could show you the worse parts, but I'd have to flash you.

Other than the GvH and its associated symptoms, I've been doing great. My blood counts continue to look good; I've not needed a blood or platelet transfusion since I was discharged from the hospital. I'll be on "house arrest" at least until the 100th day post transplant (sometime in August). That means no retail therapy, no baseball games, no roller coaster, and no restaurants. If you ask me, I think a lunch from Penn Station and a DQ pecan cluster blizzard would do a body good, but I'll follow my doctor's orders until I'm cleared in the fall. Then I'll eat ALL the food.

On the Rise

After what feels like quite a bit of waiting, my white blood count is finally on the rise. A normal WBC is between 4.6 and 10.2. Mine went as low as .2. Then, ever so slowly, it began to creep up a few days ago. First to .4, then to .6, then to .9, and finally today to 1.5. It isn't rapid progress but it's a move in the right direction. Basically this means that the stem cells from the transplant have nuzzled down into my marrow and they're starting to produce new blood cells for me. My new immune system is in its infancy, but it's working and growing. In order to go home I need my ANC (a subset of the WBC) to be at .5 for 3 days. Today's ANC was only .1, but again that's an improvement over the previous day's count of 0.0. I'll take every step forward I can get!

The doctors and nurses love this particular room decoration.

 I'm feeling much better than I was during my first week and a half in here. My nausea has mostly subsided and, while I still don't feel like I *want* to eat anything, at least my stomach rumbles and lets me know I am, in fact, hungry. I haven't had any infections (knock on wood) with the exception of a possible small infection around my "line" that cleared up with antibiotics. The hospital is terribly boring, but I've gotten SO many cards and gifts to help keep me entertained. Thanks to everyone who has been thinking about (and worrying about) me. With any luck I'll be home by the weekend!

***Update (5/2): The doctor has decided that since I've been doing so well and since my counts are way up today (WBC 2.7, ANC .8) I should get to go home tomorrow!

Hair Today, Gone Tomorrow

Today was the day I "let my hair down." Way down. Like all-the-way-to-the-shower-drain down. Almost every person who has received certain kinds of chemo (like the kinds I received to kick off my transplant) will awake one morning, look at their pillow, and see something remarkably like this...

Thank goodness Rapunzel didn't have this problem.

This is my 3rd turn at waking up to a hair coated pillow. Nothing prepared me for the first time, and not even the memory of the first loss quite prepared me for the second time. This round though, I was ready. So ready in fact that I beat the process. Many of you have already seen this, but here's Brynn cutting off my hair to send it to Pantene's Beatiful Lengths program to be made into wigs for cancer patients. Ironic wigs.

Youtube Video of the Hair Cutting

Some people lose their hair in patches, but mine just thins all over. Gradually at first but then much more rapidly. Despite clogging the shower drain with my locks, I still have enough hair tonight to perhaps have the loss go unnoticed. Tonight's sleep and tomorrow's shower won't be as kind. So I think the plan is to have one of the nurses come tomorrow and buzz my hair close to my scalp. It makes the mess on the pillow easier to endure. It also makes it easier to wear the periwinkle/lilac wig I brought just for the occasion. And in the end, like so many other things, it's no use hanging on to my hair. If it's ready to go then I can't make it stay. Luckily it's only hair and I can live without it.  And, if all goes well, I'll be growing a whole new crop of it soon.

Special Delivery: One Allogeneic Stem Cell Transplant, International Style

Ordinarily, stem cell transplants happen during the daytime, when first shift people are busily doing their first shift jobs. I'm not one for ordinary though, so when my stem cells arrived at the airport on an international flight around 8pm, we started gearing up for a late night stem cell infusion.

I was given pre-meds, like Benadryl and anti-nausea medications, so that I was as prepared as possible for the known side effects of receiving stem cells. Before the end of the night, I'd get more of each of those meds. There were additional concerns because, although my donor is a perfect match on 10 of 10 genetic markers, she has a different blood type than I do. So we knew my body might not take kindly to the cells.

♪ "Me and my stem cells..." ♪  (to the tune of the "My Buddy" or "Kid Sister" doll jingles)

Those concerns proved well founded when I (a) lost my dinner, (b) had an extended coughing fit, and (c) broke out in hives. Things were always under control though. After the infusion was complete I was given another (much larger) dose of Benadryl and you'd never have known I had any issues at all. I slept like a rock until 8:30am.

The process of infusing the stem cells was rather boring (apart from my antics). It's really just like getting blood. It takes awhile and you just sit there. Boring or not though, those stem cells are brilliant. Now that they're in my body they know to get into my bone marrow and re-grow an immune system for me. Eventually they'll completely overtake my system and even my blood type will change (to the donor's blood type and blood fingerprint).

What we hope happens is that new immune system will recognize any future cancer growth as foreign and attack it. There are worries with this too. The donor's immune system can mark *all* of me as foreign and start attacking my body from within. Fortunately my doctors are a top notch team and we're taking every precaution to prevent the stem cells from staging a full on coup. Everything from very expensive medications (like Prograf) to additional chemo treatments, help suppress the new immune system and make it less likely to rebel against my body.

A small dose of chemo, to keep my (kind, generous) donor's cells from attacking my body.

From here it's a bit of a waiting game. It will take about 10 days for the donor cells to get up in my marrow and start making any new cells to rejuvenate my immunities. In the mean time I'm taking anti-viral, anti-fungal, and anti-biotic meds to scare away any germs that might wander my way. An infection could be fatal if not caught right away, so I'm extra careful (and you thought I was a germaphobe before!). Now I'm required to wear a face mask if I leave the room for a scenic walk down the hall. Overall though, all the precautions and hiccups are a small price to pay for a shot at really, truly, FINALLY giving this cancer the boot.

A Brief Update to Assure Everyone I'm Still Kicking

It turns out that not all transplants are the same. Of course I knew that going into the hospital, but the only thing I had to base my expectations on was my last transplant. Because of that, I didn't expect to get sick nearly as fast as I did.

During my first transplant (Dec 2009) my first week and a half or so was more about killing boredom than feeling ill. This time around, however, I was feeling green around the gills by day 2, and still don't feel anywhere close to "normal" (though I am feeling better). I've been taking all kinds of medications. Some to kill viruses, some to kill bacteria, some to kill fungus, some to ward off nausea, some to help my donor cells engraft when I get them, and some chemo.

That's 3 bags and a bottle, for those keeping score at home.

I'm taking each day as they come, and some are better than others. I don't always feel like talking, texting, or being on the computer, but I appreciate everyone's love and concern. All the cards and packages I've gotten have cheered me up on dreary days. I miss feeling like myself, but a little bit of rotten right now will hopefully equate to a lot of normal old "myself" time in the long run.

Cat Poop Disease; or The Transplant that Almost Wasn't

Getting to Jewish Hospital by 8am is never easy when you're coming from Northern Kentucky. No matter when you leave the house you're fighting rush hour traffic. This morning was no exception, but I headed out anyway, ready to have a minor surgery and then be admitted to the hospital for 3-12 weeks.

But that almost didn't happen. While I was waiting to register, my transplant coordinator came down to the lobby to inform me that there was an issue with my donor. She wasn't showing any signs of being sick, but her blood work indicated that she could be coming down with an infection. Bad news, since I'm inheriting her immune system and could also be infected.

My primary oncologist was alerted to the news. He would recommend one of 3 options: proceed as planned, wait until this donor was better, or screen an entirely new donor. Either of the last two courses of action would result in a delay of at least a week if not a month or more. Everything was put on stand-by, even my morning surgery, until my doctor could review all the details.

It turns out that my donor might be coming down with toxoplasmosis, a disease contracted and spread mostly by cats. When my doctor explained the whole situation (and recommended proceeding as planned) all I could do was cock my head to the side and say in disbelief, "Cat poop disease? Really?" I laughed so hard I almost cried. Somehow I just couldn't believe that a parasitic litterbox somewhere in Germany (where my donor is from) could be a matter of life and death for me. But it is.

After a good, exhaustion-driven laugh, we decided to move forward with the transplant process now.

Step one was to install a triple lumen Hickman catheter. This is a tube that comes straight out of my upper chest near my shoulder and provides 3 lines of access into my bloodstream. Doctors and nurses love it. I like not getting stuck with needles all day long, but I hate the "line." I'm always super stressed that some tiny little germ is going to sneak into me around the area with the open hole into my body. It's a necessary evil though for the transplant, so it's installed.

The way to this girl's heart is now directly accessible.

Next I was admitted into my room, allowed to change back to my non-hospital-gown clothes, and then started on my first dose of chemo. The idea is that the chemo will eliminate any remaining bits of cancer as well as lessen my immune system (so the donor's immune system has room to move in and make itself at home). Today's chemo was called Melphalan and infused over just 30 minutes. I was so exhausted that I slept through the whole thing and don't even remember my nurse unhooking the i.v. bag!

I'm feeling pretty good all things considered. Not much pain from the line. Just a headache and sore throat from the chemo. Hopefully the sore throat isn't foreshadowing mouth sores, but we'll cross that bridge if we get there. (12:30a update: developed nausea and it's aftermath, but took meds to get rid of it. Blech!) For now I'm just hanging out in my smallish, decoration-less room.

There's more wall space than you can see here.

If you'd like to see your card, postcard, or other fun mail featured here, check out my last post here: http://sintelligently.blogspot.com/2012_03_01_archive.html
All mail is greatly appreciated (and anticipated)!

This is home for the next few weeks, help make it homey!

Mail Call!: A Plea for Letters, Cards, and Other Forms of USPS Love

As many of you are aware, I'll be checking into Jewish Hospital in Cincinnati for a second stem cell transplant on April 11, 2012 to try to kick this latest recurrence of Hodgkin's Lymphoma (and to keep it at bay for good!) The transplant process itself is simple, but the preparation and especially the recovery are much, MUCH longer processes. In all my stay will be 3 weeks at the very *minimum* and could stretch out as long as 12 weeks. It's a difficult time, as I will not be allowed to leave the transplant unit (my room and 2 short hallways). Frequently people are quarantined to their rooms, which happened to me during my first transplant. "Stir crazy" and "cabin fever" don't even begin to describe it. What's worse is that Brynn will not be allowed to visit me the entire time I'm in the hospital since the rules of the unit require visitors to be 14 years old. She'll celebrate her 11th birthday without me, since I'll be in the hospital. I missed Christmas with her during my first transplant. We skype, but it's not the same.

And so, I've decided to ask a favor.

Two favors actually.

First, I would love for everyone to send Brynn a birthday card. Her birthday is at the beginning of May, but you can send a card anytime between now and then and I'll hold onto them for her until the big day. A belated card or two would be fine as well. Who doesn't love for their birthday to stretch on for a few days afterwards? For friends who would like to send Brynn a little something, she likes art supplies, journals, fun writing utensils (like gel pens and clicky pencils that click on the side not the top), hair accessories, and anything having to do with fashion design. She loves books, music, and clothes too, but she's a lot pickier about those! Must be a tween thing. Again though, I'm just asking for folks to flood her with birthday wishes (in card, letter, or postcard form), no gifts required or even requested.

Those can be sent to:
Brynn Ensminger
P.O. Box 598
Burlington, KY 41005

The second favor is similar, but more selfish. I'd like you to send *me* cards and packages. Days in the hospital are monotonous and the room itself is unexciting and impersonal. Mostly my stay is just a waiting game. My donor's stem cells will take some time to get into my marrow and create a new immune system for me. In the interim I have to hang out at the hospital and, let's face it, a person can only check facebook so many times a day (though I'm entirely unwilling to admit how many times that is). So entertain me! Here are some things I think it would be fun to get:
- a fun postcard from where you're from to hang up in my room
- any sort of card (get well and encouragement are great, but creative and funny cards are more than welcome too!)
- letters (same as with cards, I'd love anything from encouragement to snarkiness)
- a copy of your favorite cd or a mix cd of your favorite songs (go on, expand my horizons)
- your favorite book (unless your favorite book is Homi Bhabha's The Location of Culture)
- fun activity books, like logic puzzles, sudoku, etc.
- small decorations to put around the room. I don't have much counter space, but I have a bit and I can hang things
- your favorite movie (I believe the room has both a VHS and a DVD player). Movie recommendations from Netflix are great too!
- anything else a person can do when confined to a single room for 3-12 weeks. Be creative!

There are a few restrictions though, for health purposes. Please DON'T send:
- any plant materials, including live or dried flowers
- homecooked foods. This one really hurts. I loved baked goods, but I'm only allowed to eat foods that are ordered off the hospital's menu or food that is individually packaged and sealed (like frozen dinners, cans of soup, or small bags of chips/cookies).
- germs. Please wait to send stuff if you or a family member have the plague.

My address at the hospital (starting April 11th) is:
Shawntel Ensminger
c/o Bone & Marrow Transplant Center
4777 E. Galbraith Rd.
Cincinnati, OH 45236

If any cards or packages arrive after I've been discharged the hospital will forward those to me at home, so don't worry about my check out date (though you'll be sure to hear about that on the blog!)Every single card and letter will be appreciated so much!

A few of the cards and decorations from transplant 1.0

Also, feel free to share this entry with others. The more cards, letters, and well wishers, the better!

Bone Marrow Biopsies Literally Suck...with a bonus Dexter souveneir

Bone marrow has fascinated researchers for decades. It's amazing really, producing hundreds of billions of blood cells every day as well as lymphocytes for your immune system. It is also, unfortunately, notoriously difficult to get to. Luckily for me, doctors manage to do it anyway like in the bone marrow biopsy I had yesterday.

The day's visit began with collecting a vial or two (or 15) of blood to run all sorts of pre-transplant tests. Basically any disease they can test for using blood gets tested. If I currently have some sort of disease or infection that my body is masking or simply carrying, that illness could develop in full force once we deplete my immune system. We run all these blood tests to be sure I'm completely healthy...you know, other than the cancer.

We took so much blood from one vein it collapsed and we had to stick a second one!

Then it was off for the day's main event, my third ever bone marrow biopsy. I'll never forget the first one. It was easily the most concentrated, intense pain I've been in in my entire life (and I've had a baby)! I actually lost the ability to form words and could only scream in awful shrieky noises. (Yes, yes, shout out to Elaine Scarry for those who have read her.) My subsequent marrow biopsies have been much more tolerable, although still not my favorite way to spend a Tuesday.

In order to prepare for the biopsy my doctor ordered me to take four Ativan (.5mg each) before arriving at his office, and two more once I go there if I was still feeling anxious. For those who aren't familiar, Ativan (aka lorazepam) is an anti-anxiety medication that chills you out and makes my memories of traumatic experiences kind of warm and fuzzy around the edges. So six Ativan later I was ready for my procedure.

Transplant coodinator (to me): How are you feeling? ...other than high?
Me (smiling): I don't think I'm feeling anything *other* than high.

You'd want to be high too. That's only part of the needle.

Shortly thereafter I was rolled on my side and the doctor began preparing the site where he was about to dig for marrow. I think they roll you on your side so you can't see the torture instruments they keep back behind you, but they assure me it's just the easiest position for access to the bone. I'm skeptical.

At this point I'm a little fuzzy on how things proceeded. Cut me some slack, I couldn't see what was going on and I was drugged. The version I remember is mainly a series of me thinking up synonymns for "ouch" and "f*ck* but fortunately my friend took some pictures to help tell a more coherent and less foul-mouthed story.

Step one is, of course, numbing the area. I think they numb at various levels, all the way down to the bone. Just local anesthesia though, I get to be wide awake the whole time. The next steps are all a bit of a jumble, but they use a long needle to get down to my bone, then at some point switch the needle for a small drill to drill into my bone, and they use a suctioning device to suck a sample of marrow out of my bone. I kind of think there's a long thin tube (like a tunnel) that goes down to my bone and they can put different implements through it (like a needle or a drill) but that's just my best guess. I'm pretty sure the sucking part hurts the worst, though the slow drilling part wasn't great either. Pain shot all the way down to my knee, which I suspect was my marrow protesting its abduction.

"Ooh ah, just a little bit...ooh ah a little bit more!"

What they gather (the marrow) looks mostly like blood but it does have some little chunks of bone in it as well.

I was hoping for something a little more rewarding, like molten gold.

Finally the marrow is droppered out onto glass slides to be sent off to a variety of places for testing. First and foremost we'll test to be sure no cancer has snuck down into my marrow, since that can happen with Hodgkin's. I'm not entirely certain what other tests will be performed. Some will be to prepare me for transplant, others will further knowledge on blood cancers and transplants. Before the procedure started I mentioned how all the slides laid out on the counter reminded me of the t.v. series Dexter and his collection of blood slide souvenirs.

Most people would be reminded of looking under microscopes, I think of fictional serial killers.

Once everything was said and done, I was ready to be on my way. I insisted I was just fine to walk out on my own, but apparently I kept leaning on things and the doctor said I went out in a wheelchair, no ifs, ands, or buts. I wasn't happy about it, but I cheered up when they have me my going-home present.

My very own Dexter-esque blood slide!

"Warp Speed" Ahead: Some Great but Terrifying News

(First, a quick explanatory disclaimer. As I progress through this treatment process, my understanding of exactly what we're doing to my body is always expanding. Some of the descriptions in my earlier blogs aren't as accurate as I originally thought, so if what I explain here seems to contradict any info I offered earlier it's just because I'm getting a deeper understanding of the differences between the two types of transplants.)

For days now I've been promising to share some very good news with you, and it is very good news indeed. The first three treatments of Adcetris "completely resolved" my cancer. It's gone! The final line of my PET scan report reads, "No evidence of advancing disease or recurrent disease." My body is cancer-free. When my doctor told the Adcetris drug rep...she cried. This is amazing news.

But it's news with implications. From the moment of my re-re-diagnosis, we've known that the end game was to get me in for another transplant, this time with a donor's cells. "Why?" you ask, "Your cancer is gone." Well since Adcetris is so new (released for use in August 2011) no one knows the really long term effects of it. Sure it caused me to go into remission after only 3 doses, but is it a lasting remission? No one knows. My doctor told me that if I hope to see Brynn graduate high school I need to have a transplant, and so that's what we're going to do. If we waited, and the cancer did come back, it might have developed a resistance to the Adcetris and then I would have to try harsher, less-effective drugs to prep for a transplant. We're not taking that chance (though I wonder about it a lot). We are now moving towards an allogeneic transplant at, what my doctor terms, "warp speed."

Each of those things flying by are entries on my "to-do" list.

Three potential donors were "tapped" and all three went in for the required testing to possibly "Be The Match." A few years ago donors and patients were matched based on 6 genetic markers. In recent years matching became more sophisticated and 8 genetic markers were used. Now, thanks to ever expanding technological advances, my donors and I were matched for 10 genetic markers (each additional marker increasing the likelihood of a successful transplant). Two of the tapped donors match me on all 10 markers. And they're good candidates too. The ideal donor is young and male...or if female doesn't have children. My two 10 of 10 matches are ideal. So now we're narrowing in on who, out of those two, is the very best choice. But I definitely have a donor.

There are two types of allogeneic transplants, myeloblative and non-myeloblative. The first kind (myeloblative) begins with the chemo like I got with my first transplant. It's meant to kill any trace amounts of cancer that are still around, but it the process it kills your immune system too. This was my "killer" dose of chemo. With this kind of transplant the chemo would kill you unless you received the stem cells to regrow your immune system. It turns out that this time around I'll be getting a non-myeloblative transplant, which means that the chemo they give me will be an "intermediate" dose (though still serious stuff). In this case the chemo is meant to clear out my immune system so we can install my donor's immune system. That new immune system will (ideally) recognize any future cancer growths as a problem and attack them. One serious potential complication is that the new immune system can also recognize my own body as foreign and start attacking my whole body.We're *hoping* that doesn't happen.

(graphic picture of the effects of graft vs. host disease mercifully ommitted here)

 So now things are fully in motion to get me ready for transplant. I'll go for a bone marrow biopsy next Tuesday. (OUCH!!!) Then an additional barrage of tests the Monday after that (3/19). There will be meetings with the dietitian, the psychologist, and several educators. I'll have my teeth cleaned (to reduce the risk of oral infection once the transplant is under way). And there will be loads of appointments. But then on April 11th (if all goes according to plan) I'll check into the hospital to begin the process of my second stem cell transplant.

I'll be in the hospital for longer with this transplant, and the "recovery" period after discharge ranges from 6 months to the rest of your life. I'll actually be on immuno-suppressants to try to reduce the effects of graft vs. host disease, but that means I'll be extremely vulnerable to infections. It's all a very delicate balancing act. Delicate, terrifying, but necessary. I want to see my baby girl graduate one day.

Some People Get Allergy Shots, I Get Shots of Radioactive Sugar...Still Not a Superhero

Approximately every 3 months I go to the hospital for a PET/CT scan. I've been doing this for years now. I'd love it if they had a punch card for regular customers. The very sweet ladies who work at the radiology check-in desk recognize me now and comment on how long my hair is getting. Each scan retails for about $4,000 or so.

Still, scans are fantastic because they are the only way for me to tell if my cancer is responding to treatment. Since I don't have any physical signs of having cancer right now, there's no way to know if the cancer is retreating or charging forward...until a scan.

The scans themselves are rather dull. I arrive at the hospital after fasting since the evening before. A couple times in the past I had to drink the barium "milkshakes" before a scan, but haven't been "treated" to those in a long time now. I just go in, answer a few quick questions, and get a finger stick to check my blood sugar. Assuming my blood sugar isn't too high (and it never has been) then I get injected with radioactive sugar (aka. the tracer). This is my favorite part. The sugar comes in a plastic syringe (just like any other injection) but because it's radioactive there is a thick, heavy *lead* protective outer cover. It always makes me think of Superman and kryptonite. Except in this scenario everyone in the radiology department has a weakness to it, but they're gonna inject it directly into my veins and let me metabolize it for 45 minutes. I'm not a superhero yet, but I'm taking my vitamins.

What's that "special glow"? Radiation!

After the tracer is coursing though my body, the staff dims the lights and leaves me in a quiet room for about 45 minutes or an hour, presumably to see if I turn into the hulk or bite any unassuming, non-radioactive spiders. That hasn't happened yet (blech, spiders), but what usually does happen is that in any areas in my body where cells are reproducing rapidly (you know, like cancer cells) the radioactive sugar is sucked up because those cells require the energy the sugar provides to keep reproducing so quickly. Then they run me through a machine that takes cross-section pictures all up and down my body to see what bits are lighting up as radioactive, and if those bits are any bigger than they were the last time I had a scan. For me it just means lying still with my arms above my head for about 30 minutes. Then I'm finished, which by this time is a huge relief because I've not eaten in awhile and could really go for some lunch.

And yet, while I'm generally bored by the scan procedure itself, I do appreciate the almost magical technology setting us apart from a century or two ago when I'd probably be going for blood-letting instead of radiation enhanced pictures of my innards.

"And if I die before I wake..."

When I was a little girl a hand-embroidered copy of the "Now I lay me down to sleep" poem/prayer hung on my bedroom wall. The stitching was beautiful, but that line about dying before I woke up always unsettled me a bit. After a recent purging of my mother's attic, that framed poem returned to my now-bedroom. Granted, it's no longer displayed prominently on the wall, but rather tucked in my closet area back behind some boxes and a hamper, but the idea behind that line still haunts me..."if I die before I wake."

Exhumed from my closet, soon to be returned.

Last night Brynn and I went to Target. She was beside-herself-excited to buy some fancy clicky pencils with her money she's been saving up for something special. I, on the other hand, was shopping for something I was much more ambivalent about. Stationery. Don't get me wrong, I adore school/office supplies of all sorts, and stationery is no exception. In this case though, the purpose of the stationery gave me pause. I need pretty paper, with flowers or owls or sophisticated patterns, to write letters to people in case I die.

These are letters I've meant to write for a long time. Like most other parents, I've always had the occasional thought about what would happen to my child if I weren't around to take care of her. (At least, I *think* other parents do that too). Since I've been diagnosed, then rediagnosed, then rerediagnosed, I've spent a lot more time thinking about such things. One thing I decided for certain is that I wanted to leave things for Brynn, so I could continue to connect with her even if I can't be here to do it in person. Letters, presents, videos, that sort of thing. After the first rediagnosis I made 2 videos of me reading chapters from Tales of a Fourth Grade Nothing. Nice, but not exactly emotionally engaging. When I tried to record a message for her to watch in the event that I died I broke down into a heaving, sobbing, gasping mess. And so I bought stationery.

Last night I wrote a letter for Brynn to read in case I die. I was still a sobbing heaving mess the whole time I was writing it, but that isn't what's captured in the letter. Brynn and I used to have a contest to say who loved each other the most and we finally tied when I introduced the concept of infinity. So in the letter I told her I love her times infinity. I explained that she shouldn't be scared because there are so many people who love her. I said how sad I was too, even just at the thought of having to leave her. I told her how very proud I am of her and I listed out some of the things I hope she'll always remember that I taught her. In fact, in the end the whole letter ended up being a reminder of things she already knows. Things I think every parent would tell their child throughout their lives and after. I love you, don't be scared, I'm proud of you, and I hope you remember all the things I've taught you.

Honestly, it was an incredibly hard letter to write. I hope the many others I want to write are easier, though I don't count on it. Yet, despite my personal struggle to write out those things, I believe everyone should write a few of these letters, especially if you have children but even if not. Death is hard for those facing it, but the real strength surrounding death comes afterward as people struggle to deal with it. There aren't many things I can do for Brynn if I die. I can't set up a big trust fund, I can't dry her tears, I can't watch her graduate. But I can leave her letters to help her deal with my death, were that to happen. I desperately hope that these letters gather dust for many many years and have to be rewritten as I watch Brynn grow older and mature. But just in case "I die before I wake" I know I'll have said I love her times infinity.

No News (is Good News)

I've started getting messages from folks wondering how I'm doing, which probably means it's been too long since I've updated everyone on how my treatments are going. I guess I kept waiting for something eventful to happen so I could report back, but this latest treatment is actually a treat compared to my previous chemos.

After the first round of Adcetris I did have quite a few headaches, but they weren't migraines and could be kept under control with Tylenol. Thank goodness for that, since acetaminophen is the strongest pain killer I'm allowed to take. A few other minor side effects proved to be minor annoyances, but everything has been very manageable. The most significant difference I've noticed is that my body is tired, so when I go to bed I'm liable to sleep for 10-12 hours some days. While I'm awake though, I don't feel overly fatigued. All in all, I'd much rather go through an Adcetris treatment than have the flu or a stomach virus. (Though I'd trade my upcoming transplant for either!)

With treatments only happening every 3 weeks I've had plenty of time to rest between each round. I've been trying to balance my eating between indulgence (ex. the mexican fire chips I brought home from Cancun, UDF ice cream, and Cincinnati treats) and healthy choices (ex. broccoli, green tea, fruits) but I suspect indulgence is winning out. Cincinnati is just too delicious.

Home-brewed loose leaf tea isn't bad, but it also isn't Penn Station, Skyline, or Izzy's.

My doctor told me that while I shouldn't drink alcohol for the most part, with this treatment I could have an occasional drink if it was for a celebration or a special occasion. I had one margarita in Cancun and I'm planning on toasting my upcoming 31st birthday with friends.

I'm still not sure if I'll lose my hair with this treatment or not. In the only study that's been done on the drug (sample size = 100 patients) only 13% experienced allopecia (hair loss). With chemos the drug doesn't make your hair fall out immediately, it takes several weeks. Since I've only had 2 treatments, the jury is still out on whether I'll be sporting my hats again soon. I hope to figure it out before too long though. If it's not going to fall out I'm in desperate need of a haircut, but no sense spending that money if it's going to shorten up on its own!

For Valentine's Day this year I'll have my third date with Adcetris. We'll wait a couple of weeks after that treatment (for the medicine to kick some cancer arse) and then get another PET scan (to see if Adcetris and I are working out or if I'm just getting the run around). Depending on the results of that scan I'll either (a) get ready for transplant (b) continue my dates with Adcetris or (c) have to break it off with Adcetris and start seeing a new chemo drug. While Adcetris might not bring me flowers or chocolates, it's also not brought me any nausea or mouth sores, so I'm hoping options a or b work out.

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.