Wednesday, December 24, 2008

Good news!

Good news! The spinal tap was negative for leukemia cells in the spinal fluid, the bone marrow was normal for the 2nd time in a row, and the initial culture from the bronchoscopy tested negative for infection! Woohoo! The bronchoscopy results aren't definitive and they are still waiting on other cultures to finish growing, so it doesn't mean there isn't a fungal infection, but we're hoping that my immune system in combination with the crazy, hallucinogenic antibiotic called Voriconizole will do the trick.

Oh, and now *all* of my counts are in the normal range (except for the platelets, which are just a tad below), which is super amazing. It feels great. I'll update the graphs in the next few days.

We spent Christmas Eve with my parents at Cindy and Brian's house and opened all our presents, since Johanna and I are flying out to L.A. tomorrow morning to be with her family down there. It was nice that it was still a white Christmas around here, even though all the streets are starting to get a little slushy. But before you go, please enjoy this short video of the Super Duper Reindeer Pooper in action, courtesy of Johanna :)
video
Super Duper Reindeer Pooper


Spinal tap, bone marrow biopsy, MUGA, and 3 fillings!

I'm sitting in the infusion room at the SCCA, waiting for the lab technicians to irradiate my blood. My dad and I braved the elements to get down here at 7:15 am, even though it dumped another 2" on Seattle last night! It's called a MUGA scan, and they use it to check out your heart. The procedure is pretty simple: the technician draws some blood, radioactive markers are added to the blood, and then the blood is infused back into your body. A gamma camera (cool name) records the journey of these radioactively marked blood cells throughout the body and can be used to make 3D videos of your heart pumping. Right now I'm waiting for them to irradiate my blood so that they can put it back in me so I have about a half an hour to blog about what went on yesterday. Oh, and I have to bring special documentation from the lab when we go to the airport tomorrowsince I'll be radioactive for a few days and may set off geiger counters at the airport. Wow. Apparently they can detect someone with radioactive blood from 20 feet away. We'll see how much fun that makes tomorrow's flying event. Hopefully my next blog post won't be about how I was stuck in an interrogation room for 3 hours suspected of smuggling nuclear weapons :)

Yesterday was a busy day: I had another spinal tap, another bone marrow biopsy and aspirate, and, just for good measure, 3 cavities filled by my dentist. I had a cleaning last week and we wanted to be extra sure that any sign of decay was taken care of before the transplant, since tooth decay can be a big issue when your immune system goes away. Since I was under heavy sedation for the spinal tap and biopsy, it went great as far as I was concerned. :) The last thing I remember is the doctor wiping the area on my back clean with a sterile pad, then waking up in the recovery room. The last time I had a spinal tap I suffered through some really awful headaches as a result of the spinal tap, caused by the brain readjusting its spinal fluid reservoirs due to microscopic leaks that happen during the procedure. The best remedy is supposedly caffeine, so while I was in the recovery room I downed a double coffee, got another coffee on the way home, downed 2 sodas, then finished off the day with a Vietnamese iced coffee. It's 8:30 am the next morning and I'm still a little jittery. But anything to keep that spinal tap headache away.

After the MUGA scan, I'm busy with more tests, meetings and classes until 2pm today. Woohoo! My next appointment is a flight out of here to L.A. tomorrow, and then I don't have to be back here at the SCCA until the 6th of January.

Oh, and it's snowing again in Seattle! We got a couple more inches last night and it's still coming down. The weather is supposed to get warmer after Christmas so it will probably start melting off.

Happy holidays!

Monday, December 22, 2008

Bronchoscopy went well

The bronchoscopy went well today. I was a little anxious beforehand and just wanted to get it over with. Unfortunately, I had downed a tall double latte earlier in the morning and with no food in my stomach, it caused a little problem which I'll mention later.

The nurse started an IV and explained each step of the procedure. She talked fast, but it still took 15 minutes to cover everything. I did some research about it last night so I had a general idea of what to expect. But my heart started beating a little faster as some things came to light that I wasn't expecting. Such as the fact that I would only have a mild sedative and would be aware of nearly everything, realizing that the size of the bronchoscope tube was about the size of my pinky, and that they would be going through my nose instead of my mouth. She also mentioned that family members tended not to do well when observing the procedure, since the patient often looks like he's gasping for air and coughing and experiencing extreme physical discomfort. Well, that doesn't sound so good. I asked how long the procedure took. I was hoping maybe a couple of minutes, 5 at the max. When she said 20 minutes I realized that this might not be a walk in the park.

Next, a bunch of people filed in including the doctor, a resident, the technician, and another nurse, for a total of 5 staff. The doctor and resident were pretty serious, probably because they had to drive over from UW and were annoyed about the snow conditions. :) They weren't too keen on joking around.. With Dr. Goldberg, we sing songs like "I wanna be sedated" and generally have a pretty good time, even during a bone marrow biopsy. Or maybe I'm just that easily entertained. So including my family we had 9 people in the room. Everywhere I looked, doctors and nurses and technicians were standing at their little stations, ready to go, each tending to their carefully organized medical tools. It was a little intimidating.

Mentally preparing myself for the procedure


First, I gargled a foul-tasting liquid for 3 minutes, essentially liquid lidocaine, to numb up my vocal cords. Since the bronchoscope would be fed through my nose, the doctor inserted a long Q-tip covered with more lidocaine to numb up my nasal passages. Now, I've never had anyone clean out my sinuses, so I've never experienced the sort of painful but tickling sensation of having a q-tip pushed 5" up your nose. My pinky finger only fits half an inch up there. I thought I was doing pretty good staying relaxed, but with the coffee, the number of people in the room, this Q-tip sticking out of my head, and the fact that I was going to be awake for most of it must have triggered some adrenaline response since my heart began to beat really hard. A bunch of alarms started going off and the doctors all stopped what they were doing and watched the heartbeat machine behind me that I couldn't see. Great. The next thing I knew, an EKG machine was rolled into the room by another nurse, and the doctor was on the phone ordering additional blood work for me (I had already been poked that morning). So we drew some blood, got an EKG reading, and by the time all that was done I had returned to normal on my own. Whew! The doctors suspected that it was a result of the change in medications I'd had recently. I think it was just nerves. So after that I focused on getting into a good mental state.

We started over with the long Q-tip. He then inserted the bronchoscope into my nostril and pushed it as far back as the Q-tip, and then removed the Q-tip. Every few inches, another technician would squirt lidocaine from the tip of the bronchoscope to numb the area. When he got to my vocal cords, he had me say "eeeeeee" and then squirted lidocaine on them, which felt really weird and instantly shut me up. From then on I could only give a thumbs up or thumbs down. Obviously you have an urge to cough since you have this massive foreign object in your lungs. But they are able to suppress the urge by administering fentanyl, apparently 80 times more potent than morphine, and the doctor and IV nurse worked in conjunction to balance it all out. After that it was pretty smooth sailing. To determine the infection, they then squirt saline into the lungs and the vacuum the fluid back out. It's called BAL, or bronchial alveolar lavage, and they did this 3 times. This beats the alternative of doing a biopsy, where they would actually cut a small chunk out of the lungs which has the risks of bleeding. Johanna took a video of the view from the bronchoscope camera, and you can clearly see the trachea and forks in the bronchial tubes along the way, and the times when they squirt the lidocaine. It's really amazing. Oh, and at the end I even smile and give a thumbs up :)

video
Video of the bronchoscope monitor


I think I'm more scared than I realize when I need to have a procedure that I've never done before. But the bronchoscopy turned out to be not so bad. I only really coughed a few times, and once the sedative kicked in it went by pretty quickly.

Oh, since my procedure wasn't until 11:45 am, I tried to take the bus downtown with Johanna so that I could spend some time walking around Cap Hill and hanging out at coffee shops, but after waiting an hour we gave up and called my dad, who chauffeured us down there in his nice A6 Quattro (all-wheel drive rules) with heated seats. Ahhh. After dropping Johanna off at work, I hung out at a Starbucks for a bit to warm up, then hiked over to Denny, closed because of the snow, and walked up to Cap Hill. The weather was clear and there were hardly any cars. It felt great. I love the way snow completely changes a city. I walked down Roy and over I-5 which drops you right into the SCCA campus.

Here are some of the pictures:

Walking up Denny


Seattle is a pretty hilly city


Almost to the SCCA campus


Everyone's happy that we can go home now!


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

Thursday, December 18, 2008

Unclean, wah

Yesterday I went in for a CT scan to see if the inflammation in my lungs had disappeared. I can't start the transplant process with any kind of infection in there, especially if it's a fungal infection. Unfortunately, the inflammation is slightly smaller but hasn't disappeared. At this rate it will take months to disappear on its own. It's not getting worse, however, which is good. The assumption is that my immune system is basically keeping it at bay. The next step will probably be a biopsy so that we can figure out exactly what it is and treat it properly. So far I've only been on general antibiotics. The biopsy involves either sticking a needle through the lungs to see if they can hit the area of inflammation, or going in through the bronchial tubes. Neither sounds very appealing. I was kind of bummed when I saw the inflammation since I was feeling so well and fully expected it to be gone. I'm fine with doing biopsies and tests, but sometimes you have to get yourself mentally psyched up for these things, and I really wasn't expecting to have to do it. So I was a little freaked out when I first heard the news. It's also a bummer since it will likely delay the transplant progress yet again by another month or so. I think I was mostly bummed about this part, since I get frustrated when things don't go smoothly. So I moped around for a while yesterday but I think I feel mostly OK about it now. The next step is to coordinate with the SCCA to see what they want to do since it's their call now, as I'll be under their care starting today.

Oh, I got copies of the x-rays on CD and will post some pictures online so you can see what we're talking about. It's cool, the CT scan is made up of hundreds of little x-ray slices, and the CD includes software to view the slices, so you can use your mousewheel to zoom back and forth through the body. Neat stuff.

Last night and this morning it snowed a bunch, which always puts me in a good mood, so maybe that was my consolation prize :)

Sunday, December 14, 2008

Jingle Bell Fun Run

Not much to report from the medical side of things. I took another long hike the day after I hiked that 8-mile trip around Lake Union. This time I started from South Lake Union by Johanna's work and walked along Myrtle Edwards Park towards Ballard. This trail goes through some strange territory once you pass the Magnolia bridge, where you enter a large area controlled by the Port of Seattle and the trail is literally lined on both sides with a high, barbed-wire fence. Very industrial. Tucked away near the back were hundreds of brand-new Audis and Volkswagens, and a slew of school buses. After some tacos from Taco Time and a quick stop at Starbucks to check email, I was back at the car and realized that I had walked 7.8 miles. I had assumed it was around 5 miles. I was a little stiff afterwards but it wasn't so bad.

Then today we got up early to do the Jingle Bell Fun Run, which is a 3.1 mile run or walk depending on your inclination (we walked). It was really freakin' cold out this morning and there was still snow and ice on the ground from the night before, but it was a good time. There were lots of adults and kids with Christmas costumes, and every participant was given a pair of jingle bells to hang from their shoelaces. So there was a lot of jingling and it was kind of fun and festive. The route took us from Westlake Center south through downtown, then north onto the express lanes of the freeway before doubling back downtown. In the tunnel everyone starts singing Jingle Bells so that was kind of fun. Afterwards we headed over to my old apartment and basked in the hot tub and heated pool with our friends Jenny and Greg for the rest of the morning. Ah, what a life. I won't make any comments about how I enjoy swimming around in the pool, since I got quite a bit of ribbing the last time I blogged about that, though it may have had to do with the fact that I had eloquently waxed on about it for more than just a few pages. Ah well, those were the good old days. Including my other walks, all in all I walked about 25 miles this week. Not bad!

This week things are starting to heat up again on the cancer side:
  • Monday - Blood work, tracking down medical records for insurance 
  • Tuesday - Dentist for cleaning
  • Wednesday - CT scan to see if lung infection has cleared up
  • Thursday - Restart transplant program at SCCA (more tests, etc)
  • Friday - Meet with attending physicians to discuss transplant

Here are some pictures from the Jingle Bell walk, and from that weird-ass trail that runs north of Myrtle Edwards Park toward Ballard:
A cup of coffee definitely helped this morning for the Jingle Bell Run


We finished in 1 hour, 16 minutes


Eerie rail yard on the trail towards Ballard, from my hike a few days ago


Not the most pleasant trail, but it gets the job done


Wednesday, December 10, 2008

Marathons, triathlons, and a walk around Lake Union

No, that's not me in this photo. That's my friend, Nic, who is running a series of marathons to raise money for the Leukemia and Lymphoma Society. He'll be running 13 marathons in all, and attempting to do them all in 12 weeks. I don't think my brain has fully grasped how incredible this is. But after raising money for the LLS by regularly running the Big Climb for Leukemia, a herculean effort in itself that involves running up 71 flights of stairs at the Columbia Tower, his cause became a little more personal after he discovered that I was diagnosed with leukemia. He decided to raise funds for the LLS on his own and started a blog called 13 in 12. Nic likes a good challenge, and by running 13 marathons in 12 weeks it also puts him in the top tier of the Marathon Maniacs group, a small, hardcore group of folks from around the world who can actually do stuff like this. He's completed 3 of the 13 marathons so far and has raised $1,386 as of last Tuesday. Please consider making a donation. The LLS is a great organization and making a donation is a great way for you to help out. Nic will be running a total of 388 miles in 66 days, and all you have to do is click a few buttons, whisk a few bucks (or 20 or 50) his way, and you're set. Not a bad deal, eh? You can read more about it on his blog. Nic was also mentioned in the UW Weekly newspaper. Cool!

My battle with leukemia has also inspired my brother-in-law's friend, Trevor, to enter a triathlon called the Ironman 70.3 Boise. Instead of raising funds for a particular organization, Trevor is just asking that you support him by signing up to be a donor in the National Bone Marrow Registry. Please, please, please do this. All it takes is $52, they send you a kit in the mail, you send back a cheek swab, and you're done. Out of 10 million people in the registry, I only had 3 matches, and only one of them was good enough to be my donor. Trevor is an oncologist-in-training and sees patients who are in need of transplants on a regular basis. By becoming a donor you're not only helping people like me, you're helping all the oncologists (and oncologists-in-training) who care deeply for their patients and want to see them cured. Read Trevor's post on the subject.

I did my own little part today by walking around Lake Union this morning with my laptop and backpack in tow. Total mileage: 8.1 miles. It took me about 3 hours, not including a stop at Starbucks to refuel and to get online. After this walk I was finally a little sore. With the others I felt like I could keep going and didn't feel sore at all. Though I think I'm sore because I sped up quite a bit during the last 2 miles to make sure I got back to my car in time before the parking meter expired. But I made it with 15 minutes to spare. Here's the route I took:


Here's a picture I took around the 4-mile point. It's a power station with the Seattle skyline in the background. Those buildings in the skyline are near where I started, and you can see the other end of the lake on the right side of the picture.


Tuesday, December 9, 2008

Good counts, scheduling info, trip to L.A!

Lots of good news today. To start, I went in for blood work yesterday and got my latest counts. My platelets have settled down a bit from their high of 450 last week and are right smack in the middle of the normal range now, at 250. My white blood cell counts are at 4.5, which is smack dab in the middle of normal as well. Woohoo! Though there are still some blasts in the peripheral blood, which is concerning. I've updated the graphs in the right-hand column. Hemoglobin and hematocrit are still slightly under normal, which is surprising given how much energy I've had lately. For example, yesterday I walked 4 miles and have been doing sit-ups and push-ups each night for the last few days. Part of my recent exercise kick is that I feel like I've been given a new body and I want to see what it can do. Kind of like when you buy a new car. After my walks I feel like I could easily go a few more miles. I can't imagine how much energy I'll have if these counts actually get into the normal range.

Another reason I like walking these days is that apart from being relaxing, it gives me an excuse to listen to my podcasts and audiobooks. I realized that listening to my podcast gives me something to do while walking, and walking gives me something to do while listening to my podcast. Either activity on its own to me is relatively boring. I can't listen to a podcast on the couch since it feels wasteful. And if I'm out walking with nothing else to keep me occupied, I'll start thinking of somewhere else I want to be or something else I want to do and will end the walk pretty quickly. It also helps to have several hours of unstructured free time :)

Yesterday the transplant coordinator called about getting me re-admitted into the transplant program. Last week I called to put myself back on their radar, but it wasn't necessary at all. The intake doctor knew all about me and the team was up to date on my progress so far. That was really nice to hear. Those guys are super organized. She also gave me a rough schedule and a tentative transplant date, assuming the inflammation in my lungs is cleared up by next week (keep your fingers crossed). But if all goes well it looks like the transplant will be sometime in mid-January. Here's the rough schedule:
  • Dec 18 - Restart transplant program
  • Dec 19 - Meet with attending doctors
  • Dec 22 - Bone marrow biopsy
  • Dec 23 - More testing
  • Dec 24 - More testing
  • Dec 25 - Visit L.A. to visit Jojo's sister and family
  • Dec 29 - Back from L.A.
  • Jan 6 - Transplant team makes go/no-go decision on transplant
  • Jan 8 - Hickman line (like PICC line, but goes in your chest)
  • Jan 13 - Start chemo to wipe out existing marrow
  • Jan 19 - Transplant!

It's a tight schedule except for the first week in January, and it worked out perfectly with our already scheduled trip to L.A. to visit Johanna's family. I'm really looking forward to this trip to be able to get away from Seattle for a few days. And going somewhere with a warm climate and sunshine will be nice. Johanna's sister has a roommate and family already staying with her, so she was awesome enough to treat us to a fancy beach hotel less than a mile from where she lives. How cool is that? It should be a lot of fun :) I'm looking forward to finally meeting other members of the family that I haven't met yet. Johanna has met pretty much most of mine given all the events that happened this last year.

Oh, and the bank reversed the ATM withdrawals that were made after I left my card in the machine, so that's a relief. I'm happy they were so quick about it.

Thursday, December 4, 2008

New backpack, vegging at bookstores, and my $500 lunch with coworkers

I bought a new backpack for my MacBook Pro and have been excited to use it. It's the Patagonia Lightwire 25. It's well-designed, low-profile and relatively lightweight. It doesn't have so many pockets that you forget where you put something, the zippers open and close with one hand, the laptop area is well-padded, and it even has neat little features like special pockets to store dangling straps. After being in the hospital I realized that most of my creature comforts like my laptop, books, New Yorker magazines, snacks, camera, and other small things could easily fit in a backpack, so it seemed simpler to keep them all in one place instead of scattered around the house. I was also looking forward to spending some quality veg-out time at my favorite coffee shops and bookstores now that I'm feeling better, and my messenger bag can get heavy over the shoulder. The backpack also works much better on a scooter than a messenger bag. So there you go.

For the last few days I've been content to just stay at home and putter around the house, but today I was looking forward to venturing out into the world. I set up a lunch date with some coworkers for that afternoon, and then decided to spend the morning hanging out a local bookstore. I know, tough decisions, huh. After reading this uber-hardcore post from our friend, Nic, about how he ran 2 marathons and a 50k race over just 3 days this last weekend, I was pumped, and decided to hike down to the bookstore which is a little over 3 miles away. Hey, you gotta start somewhere. It would also give me a chance to use my new backpack. Woohoo! I know, I know, it doesn't take much to get me excited. BTW Nic has started running marathons (yes, plural) on behalf of the leukemia and lymphoma society, which is a great organization. Nic is my hero. He and Rachael also came to visit me in the hospital and gave me a bunch of cool stuff to watch on DVD. They make a mean turkey burger and are generally way cooler than I am. So armed with an audiobook on my iPhone, gloves and a hat, I set off for Third Place Books in Ravenna. It was a great walk, since you can stick to residential back streets the whole way, and it felt really good to get some exercise. Listening to an audiobook while walking I think is a great way to pace yourself, since I find that I walk really fast when I'm by myself with nothing to keep me occupied. I discovered the joy of podcasts and audiobooks while I was in the hospital since I couldn't keep my eyes open for long to read or watch movies, but I could listen to an audiobook with little effort. Right now I'm listening to The Graveyard Book by Neil Gaiman. After hanging out at the bookstore for a bit, I headed back home. Total mileage: 6.8 miles. Not bad!

I had enough time to get back and shower for lunch, then headed down to Capitol Hill to meet my coworkers. I grabbed some cash from a debit machine, paid a lame $3 finance charge, and slurped up a bowl of pho. One of my coworkers paid for lunch and another paid for coffee afterwards! The sun was out and everything was just great. Except that when I arrived at my next hangout spot that afternoon, the wonderful Elliot Bay Book Company, I couldn't find my debit card when I went to pay for parking. Panic set in, as I realized I must have left it in the ATM machine earlier before lunch. I sped back to the bank. At each red light I tried to check my bank account from my iPhone. By the time I parked I finally got logged in, and was horrified to see a slew of ATM withdrawals totaling $500. Holy crap, this really sucks, I'm thinking. I freaked out even more when I remembered that my card is also a VISA card and that this person could potentially wipe out my entire bank account and savings account, since it automatically overdrafts from savings. I called the credit union to get my card blocked, and we verified that no credit card charges were made against it. Whew. It's one thing to have a credit card stolen and a few thousand bucks racked up on it, since you can get the charges reversed without feeling any pain, but it's quite another to have the same thing happen against your bank account where real money is flying out the door. I'm essentially living off what's in my bank account for these months that I'm off work, so I was pretty damn scared. I guess I've been in the hospital so long that I forgot how to use an ATM machine. I'm pretty sure what happened is that I left the card in the machine and that the screen was still showing the "Yes, I'd like another transaction" message, so the thief didn't even need to know my PIN. Easy money, I'm sure a lot of people would have been tempted. Anyway, I got the dispute forms and filled them out so hopefully the missing cash will show up in a few days. Scary!

After that I went back to the Elliot Bay Book Company, browsed some books and hung out for a while in the nice, but dark, cafe downstairs, then headed over to pick up Johanna and her mom. All in all it might not seem that adventurous, but for me this was a very exciting day :)

Wednesday, December 3, 2008

Remission!

This is kind of a long post, but I haven't posted in a week and it feels like we're at a turning point right now, so I have a lot on my chest :)

Yesterday I went in for more blood work, and the counts showed an even more dramatic improvement than the week before. Woohoo! The graph above shows my white blood counts and you can see that after the last round of induction chemo (the purple bar), the counts have actually returned to normal. The 4 orange bars are when I underwent less intensive chemotherapy. At the beginning of all this, Johanna said we should hit me as hard as possible to try and knock this thing out. I guess she was right :)

The chemo not only wipes out the cancer cells, but it wipes out most of your other blood cells as well, and you can see in the graph how my immune system completely tanked afterwards. This is normal, and once the bulk of the cancer cells were removed from the scene, the marrow could function normally and started growing healthy cells again. In addition to my white blood cell counts, most of my other counts are approaching the normal range as well, which is sort of amazing to me since I've been poring over these numbers for so many months now. In fact, my platelets are still climbing fast and are now actually *higher* than the normal range. When I saw this I must have looked a little frightened, since my oncologist laughed at me and said it was totally fine and that I should stop worrying. Combined with the news last week that my bone marrow was normal, we can technically say that I'm in remission. My oncologist said "it's like being able to tell a mother that she has a healthy baby". He was just as happy as we were.

Being in remission is emotionally weird. It's a strange feeling. For the last 6 months we've been fighting this disease, trying different types of chemotherapy, trying naturopathic remedies and just dealing with the weight of it all. When something is broken, the assumption is that it can only get better when you work on fixing it. So for the last 6 months I've been in the mindset that things are sucking, but that they will only get better since we're trying to fix it. Now that things *are* better, I find myself switching to the mindset that things are good, but that I should enjoy it while it lasts since things will only get worse. That's a hard transition to make. It's also a little hard to get too excited about being in remission since soon we'll be wiping everything out and starting all over again when I go to the transplant, and there are going to be a bunch of new issues like graft-versus-host disease and other unknown challenges to face once the transplant is behind us. I guess the depressing thing is that it feels like right now, in remission with my own blood, is the best I will be. But I'm trying not to think that way since I know it won't last long and we've got to try and fix this thing once and for all.

I'm also not out of the woods quite yet. If you remember, we discovered a fungal infection in the lungs and a possible case of pneumonia that I picked up while I had no immune system. The CAT scan two weeks back showed areas of inflammation in the lungs, which is the body's way of reacting to these infections. I've been on antibiotics and my immune system is recovering, so we assumed things were getting better. Unfortunately, yesterday's CAT scan showed the same inflammation. My doctor thinks it may have shrunk slightly, but the radiologist believes it's still the same size. Since I feel fine and haven't been short of breath or coughing, the plan is to assume things are getting better. We'll do another CAT scan in a couple of weeks to check. If all goes well, we'll head back into the transplant program which means contacting the donor, setting up a transplant date, etc. Otherwise we'll do a biopsy of whatever it is that's in the lungs to figure out what it is so that we can treat it.

The purpose of induction chemo is to induce the leukemia into remission, which it appears to have done. After induction, a person normally undergoes what's called consolidation chemo to further wipe out any stray leukemia cells and to minimize the chances of relapse. Consolidation chemo actually involves even higher doses of the induction chemo drugs (yuck), but for shorter periods of time. It can consist of anywhere between 1 and 4 rounds, where each round takes about a month to recover from. Yeah, lame. Finally, maintenance chemo is done afterwards to further prevent a relapse from happening. The problem with all this chemo is that the effects on the body are cumulative, and your organs and marrow can suffer a lot. I had liver problems and other weird issues after the induction chemo, so anything we can do to reduce the exposure to all this toxicity is a good thing. Not to mention that chemotherapy itself can increase the chances of other types of cancer down the road. Bleh.

So the issue we're facing now is whether to do consolidation chemo before the transplant, or skip it and go into the transplant as soon as the lung infection has cleared up. The risk of not doing consolidation chemo is that I could relapse in the next few weeks, which would throw a wrench into the transplant plans yet again. Since it's going to take another few weeks to recover from the various lung infections and at least 2 weeks after that to prepare for transplant, there is enough time that a relapse is possible. Obviously if the donor takes off on a world tour then we'd be forced to do consolidation chemo. But since things are going well we should be able to go directly to the transplant. We're crossing our fingers that I can stay in remission long enough to get there.

The other scary thing is that after undergoing hardcore, intensive chemo and seeing what can happen to your body when it has no immune system, I'm definitely not feeling as cavalier and invincible about battling this cancer thing. Up until the induction chemo the therapy didn't seem like a big deal. I was still working, going in for chemo every month or so, getting the occasional transfusion, and trying not to let it rule my life. And for the most part it didn't. The hardcore induction chemo gave us a little bit of a reality check as to how tough it can be, and gives us an idea of what we're in for when we go to the transplant. I'm not used to getting infections and being sick, and apart from the cancer, I've never had any kind of organ problems or any other serious problems, not even a broken bone. So when your doctor says you have liver problems and lung infections and all kinds of other weird crap because you didn't have an immune system for a week, it's very sobering. After the transplant, not only will I be missing my immune system, but I'll be taking immunosuppressive drugs for several weeks to prevent the immune system from functioning so that the new stem cells don't attack my body. So we'll have to be really careful.

It's also scary to read blogs about other people going through similar experiences, and seeing how some are doing great but realizing that others are having serious complications. For example, last night I was reading about an amazingly upbeat and awesome 27 year old woman with leukemia who just recently had a transplant and is now in critical condition and on a respiratory device after developing a serious liver disease. They've pumped several *liters* of fluid from her lungs and are running all kinds of tests to see if any other organs like her heart are being affected. I've assumed I'll get through this because I'm young, but it's sobering to realize that there are a lot of other young people my age that *aren't* getting through it easily. Some are dying. In other words, this is serious business folks. But I'm taking the long-term approach and looking at what's on the horizon, not just what's there tomorrow. And I think I'll be ok.

On a positive note, I feel wonderful, apart from being a little weak since I lost a bit of muscle while in the hospital (my legs looked even skinner than normal when I got out). But I've been walking 2-3 miles a day so that's helping. My new taste buds are finally growing in, and they are *loving* every bit of food they can find! Yesterday I had a huge helping of enchiladas for lunch, then a sandwich in the afternoon, then a big steak in the evening. And I was still hungry! The protein is good for my body since it's still re-growing all the cells and tissue that got wiped out from the chemo. Go body!

So now I'm just happy to enjoy some time off. I've been officially away from work for 6 weeks now, and only in the last few days have I *finally* been able to enjoy myself a little bit. I feel that after the miserable time I spent in the hospital, I deserve some fun stever time for a little while :) Oh and I had my PICC line taken out which is *so* nice. No more saran wrap around the arm to keep it dry in the shower or having it itch like crazy when the skin is irritated. It's the calm before the storm right now. The next round of chemo, to prepare for the transplant, will be super hardcore. So I'm happy to just lounge around, enjoy the moment, and get myself psyched up for what's next.

That's it for now :)