Friday, February 13, 2009

Day +17 - The amazing human body, more MSCs

I'm continually amazed by the human body. When you're really in tune with it, like I have been for the last 8 months, it can be discouraging to see the effects of cancer and the mayhem it causes on your body, but as you learn more about what goes on inside of you it's mindblowing how many millions of *other* parts there are, all working in unison to keep you going with hardly any maintenance. It just *wants* to work. Since I've been home from the hospital, I've been able to experience my body heal itself, and it's amazing. My hands got sunburned a couple of months back, and it flared up pretty badly as GVHD after the transplant, causing my hands to crack, peel and swell with a decent amount of pain. But I've been using dry skin therapy lotion diligently and Johanna and I can see my hands return to normal almost by the hour. My mucositis is improving and I don't experience the thick saliva buildup every few hours that I had before. I'm still paying close attention to dental hygiene and still use the special mouth rinse a lot, but it's fascinating to watch the mouth heal itself. I can eat more foods now, and can begin to taste just a little more each meal. I also got a rash pretty badly, one of those that show up in the darndest places (my groin), and that has been steadily healing itself day by day. My energy is returning and I feel more alert and active each day. I don't think I noticed all this healing as much last time I came out of the induction chemo since I was feeling pretty miserable most of the time. But since I'm feeling alert, I'm much more aware of what's going on with my body.

I think 3 things made the biggest contribution to my recovery: mental preparation, hard work when times were tough (like forcing yourself to eat, walk, stay positive), and a lot of luck. The mental preparation was probably due to the fact that I was miserable a lot during the induction chemo and had a pretty recent memory of it, so it was a constant sticking point in my head that I didn't want to feel that way again. The other thing that is starting to make an impact on me is that I'm done with the transplant! For the last 8 months it's been a roller-coaster of emotions, as you'd try to keep a normal life but then would go into the clinic and your doc would worry about you, or you'd be preparing for another round of chemo, or you'd find that your counts were down suddenly and you needed a transfusion that day. Trying to stay positive when you feel broken is tough. Especially when you know there's nothing you can really you can do by yourself to fix it, and you know it's going to be a while before you might actually get fixed, and even that might be a crap-shot. So now that it's done I think a huge weight has been lifted, which makes it feel really worthwhile to focus on making myself better for a change, since it feels like it's more in my hands now. The whole thing still isn't a slam dunk yet, since there is still a 30% chance of relapsing in the next year, so keep your fingers crossed that things keep going as well as they have. They say 5 years with no relapse is really the measure of being fully cured, so there is still a lot of time to go.

Enough with the introspection, here's what's been going on.

Yesterday Simon and I walked around the Arboretum, and it felt great to be outside. Spring comes early to Seattle, and we could already smell the flowers and even saw some robins flitting about. Since it was a weekday, it was nice and quiet. After dropping him off for lunch, I stopped by the SCCA to pick up some supplies. I felt more like a visitor than a patient. It was a good feeling. The walk gave me a huge craving for Pho, so I picked some up from Than Brothers and stuffed myself until I couldn't eat anymore. That was the first big meal I'd eaten since before going into the hospital, and I was happy that my whole digestive tract from end to end was able to deal with it just fine. Each little milestone is a big deal :) The nutritionist wants me to get at least 150 mg of protein, 2,500 calories, and 4 liters of liquid per day. The medications I'm on are really hard on the body, and it's a big deal to keep the calories, proteins, and vitamins and minerals up. Luckily, the high-dose steroids I'm on give me a ravenous appetite even though not all things taste very good. But I've found a lot of things that work, so I've been drinking a lot of milk, eating big bowls of cereal, getting in a couple of Carnation Instant Breakfasts with ice cream, and eating lots of soups and spicy noodle bowls. I have a huge craving for spicy noodles right now. The Japanese discovered a new taste called Umami, which comes from the amino acids naturally found in meats, broths and stock. The word means "delicious flavor" or "savory" in japanese. Apparently the tongue actually has taste receptors for this in addition to sweet, salty, bitter, etc. My nutritionist explained that a lot of chemo patients discover that they can still taste Umami flavors even though they can't taste much else, which is exactly what I'm experiencing with my cravings. Tomorrow I'm excited to pick up a couple of my favorite spicy Udon bowls from Central Market.

Today I had a clinic appointment at the SCCA, which consisted of a quick blood draw, then another transfusion of those magic Mesenchymal stem cells. The transfusion only took about 20 minutes, but you have to stick around for 90 minutes afterwards while they continually monitor your blood pressure and vital signs. But with the Benadryl they load you up with before the transfusion, I had a nice nap. I'll be getting 4 more transfusions of these stem cells in the next few weeks. My next clinic appointment at the SCCA isn't until next Tuesday, and I'll be on a Tuesday/Friday schedule after that, which is pretty awesome. Some folks go in every other day, or every day. Each day I still have to plug myself in to my portable IV pump, which takes about 4 hours to infuse a liter worth of fluids and minerals, but I'm starting to get on a schedule and the time goes by pretty quickly. The backpack that holds the pump and IV fluid bag makes it really convenient, and I don't notice it much. I've even driven the car with my backpack to go pick up Johanna from the bus stop.

I didn't walk outside today, but I like to help Johanna with chores around the house which gives me some exercise since I end up going up and down the stairs a few dozen times a day. Since we have to wash towels, linens, and clothes each time I use them, there is a lot of laundry to do. And with all the paper towels I use when washing my hands a hundred times a day, and the medical supplies that get thrown away after my Hickman flushes and IV pump infusions (it's amazing how much *stuff* gets thrown away in the medical industry), there is a lot of trash collecting to do. But I like to have a clean house and it's nice and satisfying to have the time to do it.

Tonight our friends Jenny and Greg came over and made food for us, inspired by their recent trip to Thailand. They brought sticky rice with mangoes, an awesomely sweet dessert, and showed us pictures from their trip. My sister, Brian and my mom were here as well, so we hooked Jenny and Greg's laptop up on the network and had fun using the Xbox 360 to look at the elephants, temples, thai food, and manta rays on the big LCD TV. Such a better way to see pictures than crowding around a laptop monitor.

Oh, and while I'm babbling, I just wanted to point out that I love my MacBook laptop. It's one of the new 13" unibody versions with the backlit keyboard. I've had a lot of laptops, and have gotten used to their quirks and various issues and have been relatively happy, but I've never experienced the pure joy that I get when just opening the lid of the MacBook, having the bright display come on a second later, being able to use it right away, and the fact that it's whisper quiet. It really just works that great. I loved having it in the hospital, and I bring it everywhere with me now, even to the SCCA between doc appointments and during transfusions since it's so quick to open and close. Anyway, if you're thinking about a new laptop and want to try a Mac, I highly recommend the new MacBook. There's a fun video to watch here if you're interested in the unibody design, machined out of a solid block of aluminum.

Tomorrow is Valentine's day, and my friend, Jason, said I should tell Johanna that my red eyes are a Valentine's day present, since "red is the color of love, right?". Perfect :)

1 comment:

George said...

You are an amazing body... don't stop blogging!! I got to have my Stever fix!!

How weird the rash was a result of the sunburn weird!!