Sunday, December 21, 2008

Back in the SCCA

It's late and I should probably be in bed, but I wanted to give an update. I'm also having too much fun blogging from the laptop in front of the fire, watching it continue to snow in Seattle. The picture to the left was taken by my sister, who snapped a guy skiing down a hill near their house. Let there be snow!

I rejoined the transplant program at the SCCA last Thursday and have gotten reacquainted with the nurses and doctors on the transplant team. Unfortunately, I had to start all over again instead of leaving where I left off. But luckily I was only 2 days into it so it wasn't too big of a deal. I'm just happy to be in the program again since it feels like they are really there to take care of me and get me to a transplant. The SCCA (Seattle Cancer Care Alliance) is 7 stories high, and my daily itinerary usually involves visits to departments on different floors, like radiology, infusion, pharmacy, the blood lab, the transplant team, and the bistro. So I end up bumping into people from my transplant team regularly throughout the day which gives the place a kind of neighborhood-like feel. The SCCA is sort of one-stop shop for everything I'll need before and after the transplant, which is a satisfying feeling, though the amount of appointments each day can be exhausting. They also keep an amazingly tight schedule. Rarely do you sit in a waiting room for long, but your day is also booked solid, so they can't afford to hold things up. I even have a scheduler person assigned to me whose sole duty is to keep me updated when my schedule changes. Each day I get an updated itinerary for the next few days. By the way, the SCCA is made up of doctors from the Fred Hutchinson Cancer Research Center, UW Medicine, and Seattle Children's. It's a great way to bring a lot of knowledge to one unified place for treatment.

Now, the news: I'm still in remission (hooray!), but the fungal infection continues to show up on the CT scans. The doctors were hoping it would be gone by now. Luckily it's not affecting how I feel, so it's presence is only impacting the transplant schedule since I can't go into a transplant with a fungal infection. Since it's not going away on its own, the SCCA is being more aggressive about treatment and started me on a new antibiotic called Voriconozole yesterday. They waited to use it until now since it's pretty expensive and has some funky side effects including hallucinations, blurred vision, and "strange dreams". Well, I have strange dreams all the time so I'm not sure what to expect, but I'll be on the lookout for anything that might be stranger. I also haven't seen any hallucinations yet (darn), but I have noticed pulsing flashes when I close my eyes, and colors seem to be desaturated, or washed out. It also makes me really sensitive to light. It goes away soon after, but you just have to wonder what the hell it's doing in there. Oh, and when they said expensive, they meant it: $4,400 for a 1-month supply. Luckily my co-pay was only $50. Whew!

Tomorrow I'm having a bronchoscopy to see if they can figure out what's causing the inflammation, in case it isn't a fungal infection. It shouldn't be a big deal, but with my healthy immune system I'm disappointed that my body didn't kick this thing to the curb already. The bronchoscopy involves feeding a fiber optic cable down your throat and into your lungs (I'll be sedated, whew). There is a light on the end, and they can control the tip of the cable to choose between one airway or another. The image at the end is also transmitted to a viewing monitor. Once the inflammation is found, they squirt saline around it from the end of the cable, then vacuum it back up. This pulls in the fluid around the inflammation so that they can see what's in it. I've never had one before but I'll be sedated, so it shouldn't be a big deal. Wish me luck!

In other news, I've been enjoying all this new SNOW we keep getting in Seattle! The ruler in our backyard shows 9" so far. I walked about 3 miles in the snow today and am looking forward to walking Johanna to her bus stop tomorrow morning. I'm excited to find some free time so that I can hang out at a coffee shop in Cap Hill or near downtown while the city is still blanketed with snow. We're expecting 4 more inches tonight. Woohoo!

I promised an x-ray picture from my CT scan, and here it is. This is a cross-section of my lungs, as if you were looking up through my body. The inflammation is the little doughy ball on the left. There are a couple of other areas, but this one was the biggest.

Inflammation is the little doughy ball on the left

3 comments:

DKS said...

Steve,

Hi--I'm Brian McLean's "big sister", Diana. You probably won't remember me and that is completely fine, but Mom and Dad are here visiting and they follow your blog and asked me to check it for them, and now I'm following it too and sending good wishes your way from Spokane. I just wanted to drop you a quick note to let you know you're in my thoughts.

Happy holidays and best wishes,
Diana Serquina

obscurity said...

So i was listening to NPR tonight and they had a really cool story on the way the technology community has been able to come together and help those who are facing illness, etc.

One of the sites was http://www.caringbridge.org/ which is a site that allows people to communicate with their friend/loved on who is ill, and to see what they need (i.e. Pizza!) and volunteer to help out.

PRETTY AWESOME. Too bad we hadn't heard of this a few months ago, but ... I have to say, you have made this blog very interesting to read, and I can't wait to look back on this entire chronology and smile ... once we are kickin back and drinkin a brewski while out snowboarding. (Ok, not at the same time).

In the meantime, it's -30 with windchill here. -6 without.

Steve Rider said...

Hey Diana, nice to hear from you! Sorry for the late response. Johanna's dad lives in Spokane so I hope you're able to dig out from all that snow :) Say hi to your parents next time you see them.