Monday, July 13, 2009

Arkansas

Here we are in Arkansas. And here is an artistic representation of my hair:
(It's really, really humid here.)  

Little Rock is surprisingly adorable. I was expecting dirt roads and overalls and a lot less teeth, to be shamefully honest. But I can't even be snarky because everyone is so kind and, yes, there are even fun things to do here, including this, this and even THIS

So our first day at the hospital campus was yesterday. We had a bit of a rough start with intake when they wanted us to sign some clinical trial consent forms that were not explained very well, and therefore we weren't sure we wanted to sign. It was kind of like, "Signing this form full of ambiguous legal jargon is voluntary, but not really because you're going to sit in this room until your wife cries and you are frustrated and you end up signing because an additional pull of bone marrow will be much less painful than this conversation we've been having with you for the last hour." Phil initially didn't want me to blog about that experience, but I think it's pertinent information for two reasons:
#1) We learned that we need to ask questions until we're satisfied with the answer we're given. If a document doesn't make sense to us, we're not going to sign it without a proper explanation.
#2) The rest of the day was the exact opposite of that experience.

Immediately after The Consent Form Fiasco of 2009, a sweet volunteer in her late 60s came into our room, scooped us up and swept us off to our first appointment, serving as our tour guide. She zipped us here and there, to and fro, all the while chatting us up and giving hugs to everyone she passed on the medical campus. We quickly observed that this is not like any other medical facility that we've been to (and we've been to a lot). This feels kind of like a hotel, with staff members and patients taking an active interest in each person they meet. I had a valet walk me to the coffee shop this morning when I got turned around, and a lab tech mentioned to Phil yesterday that she recently went to church with a patient for moral support. More than once we've looked at each other in bewilderment and asked, "Where are we?!" We've been that blown away by the genuine kindness of everyone here. Our amazing volunteer and I both cried when we parted ways, and she insisted that she was going to start having a weekly "vegetarian day" in her house. 

But, let's face it, kindness only gets you so far when you have myeloma. So I'm excited to say that we're absolutely stoked about the technology that's available and being utilized to quickly move towards a cure. Here's what they're doing.

Yesterday Phil had a bone marrow biopsy and was a champ. Everyone, myself included, kept trying to talk him into the pain medication but he was insistent that he wouldn't need it. Sure enough, he came out and was like, "That didn't even hurt." (If you know Phil, you know he's not the Tough Guy type, he just has the highest pain threshold of anyone I know.) The bone marrow biopsy will help determine the status of his myeloma, but will also allow his chromosomes to be examined in order to get a more complete picture of what's happening and what will happen with his particular type of myeloma. You can go here to read more about the Arkansas approach.

Then he had a test to check his lung capacity which, when asked for details, he replied, "It was fine. I had to breathe." So no big news there.

Oh, and also he's been carrying around his beloved pee pod for his 24-hour urine sample, which determines protein levels. See?

So on tap today is an echocardiogram to ensure that his heart is in good working order. All of these tests are standard, even for the 28-year-olds. (He is the only one here and is already earning a reputation, as in, "So you're the 28-year-old.") And then later this evening is a PET scan, which we are looking forward to. Well, we're looking forward to getting the results, hopefully by the end of the week. This will tell us if there are any tumors in his body and if so, where they are located. It's fascinating.

So right now we're hanging out in the patient lounge. It's more comfortable than our hotel room, with free snacks, TV and free WiFi throughout the campus. I'm currently lounging in a recliner, nursing my whacked-out neck and waiting for our first appointment and Phil is working on Scoutforce. Of course.

My battery life is waning so I'm signing off until I can swipe my charger back from Phil... more info later!

5 comments:

Daniel said...

thanks for the update, keep them coming! we are praying for you guys.

Stephen McKenna said...

I don't see any pee in that pod Phil. Get to work!

Steph - the 313 said...

i'm so glad they're treating you guys well. as for the two lessons you learned - yes yes and yes! when i was working med-malpractice, that is the number one lesson i learned very quickly from our sad clients - always ask as many questions as you need to ask, until you get the answers you are looking for. and if you don't get the answer you're looking for, get a second opinion if at all possible.
i hope your neck feels better soon and that kiddos are ok with your parents. :) love and hugs. steph.

Cassie said...

Thanks guys! Stephen, that was actually his *second* pod. Heavy water drinker here.

tiffany said...

ok, a) i totally feel you on the monica hair front. mine does that in, like, 37% humidity. b) i'm glad arkansas is treating you so well and c) i'm not happy arkansas is treating you so well, because i don't want you to move away. i know we never hang out, but i also feel like hanging out could occur at any time! because you're just down the road!