Wednesday, February 25, 2009

Day +29 - Preliminary results from biopsy are good!

The flow cytometry tests from my bone marrow biopsy came back negative, which means my marrow is functioning normally and there are no signs of the disease. Woohoo! The pathologist's report isn't ready yet, but this is great preliminary news.

Yesterday was a pretty long day at the SCCA. The infusion rooms were full and we had to wait a while to get in and then the Mesenchymal stem cells were delayed even further at the lab. So after a blood draw in the morning, I was back again for the infusion from 1:30 until 6. Luckily I only have one more of these infusions to go. I picked up a few more bags of magnesium IV fluid, and then it was over to pick up Johanna and head home. It's amazing how many supplies are required for my daily maintenance. I have to be diligent about keeping track of when my saline and heparin flushes and all the other various supplies like IV tubing, alcohol preps, Hickman dressings, parafilm, and tape are running low. On top of that, I only get 4 IV bags of magnesium at a time, so I have to remember to visit the pharmacy whenever I'm there to pick up more, which requires getting in touch with the RN if the order hasn't been sent down yet. On March 8th I'll be switched over to a home-delivery service which will be great.

A couple of days ago I started getting a rash in my underarms, which has now started becoming painful, and I was concerned it was a resurgence of graft-versus-host disease (GVHD) now that I'm tapering off the Prednisone steroid. But the doctor said it was just a chafing issue. I thought that was weird, since I've never chafed there before. Johanna had mentioned the night before that maybe I was losing my underarm hair, and I was like "no way". But I took a closer look in the mirror and lo and behold, there's no hair there! The conditioning chemotherapy I had for the transplant has caused a lot more hair loss than the induction chemotherapy. My head and face are completely follicle-free, and I haven't shaved in weeks. The rest of the hair on my body is probably 30% of what it was before, and my eyebrows are now starting to thin quite a bit. I'm not sure when it will start growing back, but with my puffy face and almost hairless body and still-weird eyes, I look like a pretty funky dude.

The other annoying thing is that my lips are constantly chapped, and I've determined that the skin there is sloughing off about every 3 days. So they're either in a state of being chapped and peeling, or fresh and pink and sensitive.

Finally, my eyes are clearing up and you can see more white in them, but I get blurry vision and teary eyes a lot now. It's a result of one of the medications, but it really makes it annoying trying to do anything like work on the computer or read or drive. I usually have to rest my eyes for an hour every few hours to keep them going.

Other than that, things are great :) I'm tasting more and more foods, and my appetite is still ravenous, even though I'm tapering off the Prednisone steroid and am only taking half the dose I was taking at the beginning. The dose will continue tapering down until it hits 0 on March 20th. I'm a little anxious about this, since I'm wondering how much the steroids are masking how I'm really feeling. The docs expect me to feel more fatigued, less motivated, less hungry, and possibly nauseous once I'm off the steroids, so we'll see how it goes.

Today and tomorrow I have no clinic appointments, which is awesome. This morning my dad and I walked Johanna to the bus stop and then we continued on to Cloud City Coffee and back home for a nice 3-mile walk. I'm looking forward to puttering around the house and working on fun projects all day.

Monday, February 23, 2009

Day +27 - Milestone bone marrow biopsy

That's my portable IV pump and magnesium bag, sitting on my "IV purse", a little travel bag that I borrowed from Johanna. The backpack from the SCCA is great, but I found it's overkill for what I need right now, since the backpack has elaborate pouches and velcro straps meant for the big IV bags of fluid and it can take a few minutes just to lock everything down. With the magnesium, I can just drop everything in the purse and it's no problem. I've gotten the hang of this infusion business so that now that I can spike the bag, prime the tube, program the pump, flush my Hickman, drop everything in the travel bag, and be back up and about in just a few minutes. Unhooking is even quicker.

My dad picked us up at 6:30 am this morning for my first bone marrow biopsy after the transplant. This will determine how well the new stem cells are engrafting and whether there are still signs of the disease. All transplant patients have this bone marrow biopsy on or around Day 28, so it's a big milestone. Up until this point we've only assumed that things are going well with the engraftment, but the biopsy will give us an accurate determination. After a quick blood draw, it was time to get sedated :) As I'm falling asleep, the room quickly fills up with various people, including my doc, the lab guy who will collect the specimens, the technician performing the operation, and the sedation guy. My dad and Johanna stayed in the room to watch.

The biopsy went great, and I'm hardly even sore. But to ward off any future soreness, I took a 2-mile walk with my dad to my favorite coffee shop, and it felt good to be outside and active. I've noticed if I just sit around after a bone marrow biopsy my hip will be sore for days, which makes it hard to get in and out of the car, among other things. Hopefully we'll know the results of the biopsy in a day or two.

Last night Johanna changed my Hickman dressing for the first time and she did a great job. Two sets of gloves are required, and there is a lot of sterilization and scrubbing involved. The dressing is basically a super-sterile piece of adhesive plastic with a small "bio-goo" square in the middle that covers the entry site. The bio-goo releases Chlorhexidine, a chemical antiseptic. The nice thing about the Hickman dressing is that it's waterproof, so all I need to do before showering is to cover the ends of the catheters with a special parafilm wax, and that's it. With the PICC line, I had to saran wrap my arm with tape (hard to do by yourself) and the tape was constricting when showering and painful to remove. The Hutch has really done a lot to make the Hickman dressing as unobtrusive as possible and are constantly making improvements. In fact, this new all-in-one dressing with the "bio-goo" attached was just put into use in 2009.

This weekend we had lots of awesome food stuff going on. We started Saturday morning by making 22 breakfast burritos to be frozen for eating later. I'm in love with New Mexico style breakfast burritos, with scrambled eggs, hot green chiles, hash browns or potatoes and fresh, flour tortillas. Now that one of our favorite grocery stores, Central Market, makes fresh flour tortillas right in the store we've been making burritos to be frozen. So Jenny and Greg came over, and we had a fun time making an assembly line and making all the burritos.

Sunday morning Nic and Rachael came by and we served them up some awesome blueberry buttermilk pancakes with lots of bacon on the side. I have a favorite recipe for buttermilk pancakes, and the blueberries knocked it out of the park. I'm definitely going to use blueberries again. We then did a 2-mile walk to Cloud City Coffee and back and chatted all along the way. It's nice to see our West Seattle friends :) I should go over there to do some of my walks.

Sunday night, Simon and Justine came by and treated us to a smorgasbord of delicious pizzas, all from scratch. Simon's a bit of a foodie and brought in a tray of 8 perfect little balls of pizza dough that he had made the day before, along with a bunch of fresh ingredients including buffalo mozzarella, peppadew, arugula, pesto, sheep's milk feta, mint, and this amazing home-made tomato sauce. He even made sure all the ingredients were pasteurized and fit the food requirements for me to eat. He heated up his pizza stone, and started making pizzas one after the other with various combinations of toppings. It was heaven.

Tomorrow morning I have a quick blood draw. Then in the afternoon a visit with the nutritionist, another infusion of Mesenchymal stem cells and a clinic visit with the doctor. Hopefully the infusion will go as fast as the last one. Oh, and in other news, I'm finally not in contact isolation anymore, which was a designation I was given after discovering that I had the c.diff virus while I was in the hospital. Instead of normally worrying about getting infected by others, the presence of c.diff meant that the clinic staff had to protect themselves against me so that they wouldn't pass the virus to other patients. So each time I go in for a clinic visit or blood draw at the SCCA, all the nurses and doctors and technicians have to wear gloves and gowns around me. And each time I use the restroom there I have to flip over a sign on the door that says, "DO NOT USE", which instructs the cleaners to bleach clean the bathroom after I use it. It's been a pain, so it's nice to finally be out of contact isolation.

Friday, February 20, 2009

Day +24 - Clinic appointments

After a quick blood draw and a visit to the snot guy this morning, my parents and I left the car at the SCCA and walked about 3 miles up and around Capitol Hill, stopping at a spacious Starbucks to fuel up and enjoy the morning. There is an overpass we walked along that overlooks the entire SCCA campus, and my dad snapped a picture of me in front of the main building. I can point out about a dozen windows that I've been in.

After lunch, I had another transfusion of Mesenchymal stem cells and a clinic visit by the attending physician. I learned a few new things I didn't know about. For example, my white blood cell count is continuing to skyrocket and is much higher than the normal range now. It's at 24 and should normally be between 4 and 10. The doctors explained that the Prednisone steroid is responsible for this, which causes the bone marrow to forcefully push white blood cells into the blood stream. Unfortunately, these white blood cells aren't really functional, and he explained that my immune system is still heavily depressed and essentially non-existent. I guess I sort of knew that, but part of me was hoping that my new stem cells were just rocketing along and taking care of business, fixing damaged tissue and gearing up to fight bacteria in their new home.

My doctors were happy with my walking, and I learned that the steroids only cause muscle atrophy from your waist down. In fact, they recommended not doing any upper body strengthening since it can cause the Hickman catheter to move around unnecessarily inside your body, which could possibly cause a blood infection. I've noticed my arms are a little thinner, but we'll just have to wait to work on that until I get the Hickman line removed, which won't be for several months.

This is my 4th of 6 transfusions for these Mesenchymal stem cells, and even though the transfusion only takes about 30 minutes, there is a 2-hour follow-up to monitor your condition to make sure there are no adverse side effects. So by the time we were done, it was 4:30 pm, and we picked up Johanna and headed home. I treated Johanna to a takeout bowl of Pho noodles since she's been getting jealous of the various fun foods I've been taking home while she's been working hard, and it hit the spot.

I got really tired after dinner and took a solid nap for 2 hours, during which I received a phone call and had no idea what was going on. For some reason I get this post-Benadryl hangover several hours after it's administered, and sleep so heavily that I can't tell what day or time it is when I wake up. The good news is that the phone call was from the SCCA, and they are lowering the dose of my Tacrolimus, one of the drugs that prevents GVHD. This is good since the side effects from this drug include tremors and blurry vision, both of which I'm experiencing regularly now. It also suppresses magnesium in the body, which is why I'm required to infuse a small IV bag of magnesium each night. I'll be on this drug for a while, but if the dose becomes low enough I'll be able to replace the magnesium IV infusions with an oral pill.

Next Monday I'm going in for the milestone "Day 28" bone marrow biopsy (they actually scheduled it for Day 27), which will accurately determine how well the new stem cells are engrafting and whether there is any sign of the disease. I'm excited and anxious, but mostly excited that the days are flying by and that things are continuing to look good.

Here are some pictures from our walk. On the way back we meandered over into North Capitol hill on the west side of Broadway, which is near where I used to live and still one of my favorite areas of town.

Mom on top of the world

The Space Needle is right behind my head


The hoody + floppy-hat look

Thursday, February 19, 2009

Day +23 - Feeling great!

Today I woke up feeling great. It's probably because I slept well, which hasn't happened in a while. A couple of the medications can cause trouble sleeping, and since I'm still getting up about 3 or 4 times a night to hit the restroom it's hard to get back to sleep each time. But even with getting up last night as well, I fell back into a deep sleep and lumbered along until 8 am. It felt great. It's also been 23 days since the transplant, and 23 happens to be a favorite number of mine, so go figure. Part of me is a little scared that things are going too well, but I've always had a cautious outlook.

The picture above was taken by my friend, Simon, on a walk we did around Seward Park yesterday. You can call me chrome-dome now :) I was pretty lathered up in sunblock, but luckily most of the walk was done out of direct sunlight, so I got to uncover a bit. On the way back he offered to let me drive his Porsche, and we'd had such a fun walk on a beautiful day that it was hard to say no, even though it's his baby :) It was a fun drive back along the twisty Lake Washington Boulevard.

Before the walk with Simon, I did my do-over blood draw at the SCCA since I had screwed up the test the day before by taking one of the medications at the wrong time. My team scheduler called to make sure I stopped by for a chest X-ray before going home, and I was home and back from the SCCA in 30 minutes. That's awesome. Having everything in one building and a highly coordinated staff sure makes a huge difference. Troy, the team scheduler, keeps me up to date on my schedule anytime it changes, and the rest of the staff keeps me informed regularly about what's going on. All of them even have email addresses, and they respond quickly! These guys are really spot-on.

My breakfast burrito yesterday morning reminded me that I still need to be careful with my delicate mouth. The whole mouth is slowly re-growing its lining, and a little piece of egg in my semi-hot burrito opened the tiniest blister on the roof of my mouth. It's gone now, but, argh!

So anyway, today I woke up feeling great. I drove Johanna to her chiropractor appointment, and met her chiropractor, who is also a fireman and is running up 69 flights of stairs on my behalf in the Firefighter Stairclimb at Columbia Tower, a worldwide competition among firefighters to raise money for the Lymphoma & Leukemia Society. My friend, Nic, the ultra-marathoner, runs this same climb every year, but these 1,500 fireman run up all those flights in full firefighting gear. Holy moly!

After the chiropractor, we stopped at Moka's for coffee and an egg breakfast sandwich (yum), then I headed back home to tidy up the place in preparation for our housecleaners. I finished a funny book called Couch that my brother-in-law gave me, and headed down to the Audi dealer to fix a windshield crack. The receptionist: "We've got pastries and donuts while you wait." Me: "Thanks." (I can't eat food that's in the open) "Do you have wifi?" Receptionist: "Yes!" Heaven :) They couldn't fix the dent since it was too low on the windshield, but I got a free car wash/vacuum out of it and a relaxing time playing on the MacBook enjoying the change of scenery. Then it was lunch with a friend, where I had pizza for the first time in a month, and it tasted pretty good. Not perfect tasting yet, but agreeable. I met with my boss to chat about stuff over my 2nd coffee of the day (yay coffee tastes ok!), and then picked up Johanna from work, hooked up my portable IV pump to get my daily infusion of magnesium, and we headed over to my parent's apartment where my mom had a wonderful shrimp creole ready and waiting. My sister and her husband were there, and we hung out in front of the fire afterwards chatting and digesting. After getting home, Johanna settled in to watch the weird Grey's Anatomy / Private Practice crossover thing and I finished and filed our taxes. Then it was time to take a shower and get ready for bed. Whew!

Tomorrow I have another day of SCCA appointments, including a blood draw, a visit to the snot guy, and another transfusion of those magic Mesenchymal stem cells. Johanna hates these transfusions because of the fishy smell that lingers on me all day as a result of the preservatives in the IV bag. I don't mind since I get a nice Benadryl nap out of it. I'll also be meeting with the attending physician to go over any new issues. Wish me luck!

Steve with a big smile after driving Simon's fast, shiny Porsche!

Wednesday, February 18, 2009

Day +22 - Pictures!

My friend, George, reminded me that I should post more pictures on my updates, and I realized I didn't even have a picture of me at home yet! Duh! My mom took this picture of me tonight while I was in my favorite hang-out spot, playing around on the web and just generally goofing off.

So that walk that I was going to do today after eating my Pho noodles? Didn't happen. Instead, I helped babysit the wonderful beef stew that had been simmering for several hours, and then just before getting ready to go out, I decided to lay down on the couch and close my eyes, you know, just for a few minutes. The next thing I know, my mom is at the door, asking if I'd added the potatoes and carrots, that's she's tried to call me twice, and I'm looking at her like, "What is she talking about?" I was so thoroughly zonked out that I couldn't tell if it was morning or night, and my first reaction was that she had come over to take me to the SCCA for our next round of appointments. I think it was part of the Benadryl hangover from earlier in the day. So tomorrow, I walk. But I did do a lot of chores around the house after I woke up, picked Johanna up from her spa massage an hour later, and then we chowed down on the stew like there was no tomorrow. It was great.

My mom came by after dinner to learn how Johanna bleach-cleans the house every night, including countertops, sponges, bathrooms, doorknobs, and cutting boards. Now my mom can come by and share some of the burden, which she likes to do :) There is a lot of maintenance required to keep me germ-free since I have no learned immunity, just like a newborn baby, and I'm lucky to have the best caregivers around.

Wine makes everything more fun!

Scrubbing away in scrubs

By the way, next Tuesday is Day 28, which is the day all transplant recipients get a bone marrow biopsy to see how well the new stem cells are grafting. I remember thinking Day 28 was so far away when I was at Day 0, and how agonizing it would be to wait that long to see how well they were doing. Well, my white blood counts are now off the chart. White blood cells have the shortest lifespan, so they die off quickly but are reborn more quickly. So I think what's happening is that the new white blood cells are gearing up to start fighting off the remnants of my other blood types, like red blood cells which can hang around in the body for months. If they start getting *too* high it could indicate a problem, but none of the doctors were concerned with the numbers.

I wish my portfolio would start trending like this...

I figured I'd throw in an "evil eyes" shot for posterity. This one was taken a few days ago by yours truly. In the last couple of days, some of the red is finally dissipating and there are places where you can see the whites of my eyes again. So now I have this splotchy, mottled, reddish-white eye look. Oh well.

I might make a mask of this for next Halloween

Ciao for now.

Tuesday, February 17, 2009

Day +21 - SCCA visit, feeling great

The magic Mesenchymal stem cells were late today, so we had to wait an extra 90 minutes before they could start transfusing. Last Friday the stem cells came on time for an 8:30 am transfusion, but apparently it takes a an hour or so to prepare, so the technicians were complaining last week that they had to go in to the lab really early. Today they just slept in I guess, since we didn't start the transfusion until 11 am. But my mom and I ended up getting a lot of business done in those 4 and a half hours I was hanging out in the transfusion room. Basically that's where I stayed all day, either sleeping from the Benadryl, playing on the laptop, playing on the iPhone, eating a boxed lunch, or sending my mom around the building to pick up supplies.

The doc stopped by the transfusion room for a clinic visit and expressed how happy he was with the way things were going. I was worried about some swelling in my legs, but he wasn't concerned since it was happening equally in both legs and that exercise will help (I *have* been slacking a little on the walking lately). Last night Johanna and I walked down to PCC Market and I hauled back the groceries in my backpack. Today I plan to do a nice long walk with another This American Life podcast.

Then the nutritionist came by and gave me another gold star on my eating habits. I'm hitting my target goals for calories, protein, calcium and Vitamin D, thanks to a nicely polished little iPhone app called Lose It! that lets you establish a calorie budget so that you can quickly see how much more you need to eat. Yeah, weird problem to have, huh :) She noticed an upward glucose trend but wasn't worried about it. I'll meet with her once next week, then once every other week after that. She said the swelling in my legs can also be caused by the IV fluid, since there is a lot of salt in each bag.

I sent my mom on some errands around the building to pick up a bunch of supplies, such as:
  • 300 30 saline syringes + 150 30 heparin syringes (used to flush my Hickman lines each day)
  • 2 bags of parafilm, a wax paper for covering the Hickman ends while showering
  • 3 more tubing kits for my portable IV pump
  • 2 bottles of Nystatin topical powder (for my, *ahem*, rash)
  • 5 bags of IV fluid (magnesium)

Good news: I'm off the 1 liter bag of IV fluid! This bag takes 4 hours a day to infuse using my portable IV pump, which isn't so long, but it's still a long time to listen to a little whirring pump and feeling like you're jacked in the whole time. They've switched me to a small bag of magnesium now, which only takes an hour to infuse. Should be a cakewalk.

More good news: Last Friday the docs put me on a taper schedule for the Prednisone, a steroid that helps treat GVHD but which also makes you incredibly puffy and causes all sorts of other side effects and issues. I started on a pretty high dose of 90 mg twice a day, and the taper schedule will decrease the dose to 0 by March 20th. I've already gone through one of the taper cycles, and am hoping my face and body start returning to their normal shape pretty soon. It's very weird to see someone staring back at you in the mirror that doesn't look like you. I'm also excited about taking less pills. I started at 32 pills a day and the number should start decreasing as we reduce the various meds. Some I will be on for many many years.

Unfortunately I need to go back for another blood draw tomorrow since I screwed up one of the tests by taking my medications in the morning. One of the medications is called Tacrolimus, which helps prevent GVHD, and they regularly check the levels in your blood to see if they need to adjust the dose. But if you take the drug before the blood draw, it screws up the test. It's annoying that they didn't mention it for today's draw, so from now on I just won't take it before any blood draws to be safe, since they're usually scheduled early enough in the morning anyway.

My mom just put on a classic beef stew to roast for several hours, so I'm excited about that for dinner tonight. But right now I'm off to enjoy the sunshine (with lots of sunscreen) and to get some takeout Pho from Than Brothers.

Oh, and right now my favorite thing to do at home is to sit on the couch in front of the stereo with the MacBook, playing on the web and writing code, and blasting music wirelessly through the living room speakers through iTunes. It's nice when technology is fun and easy.

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 :)

Wednesday, February 11, 2009

Day +15 - SCCA appointments, MRI, walked 5 miles

It's late, but here's a post to re-cap the day. Today was my first day back at the SCCA for regular clinic visits now that I'm out of the hospital.

The day started early at 7 am with a scheduled blood draw. Then I had an MRI of my pelvis which is part of the clinical trial for the Mesenchymal stem cells I'm receiving, those special stem cells that actually can regenerate tissue (with my strange red eyes and automatic-tissue regrowing cells, I feel like one of the X-Men). The purpose of the MRI is to establish a base line to make sure there is no abnormal tissue growth. In all of the 850 trials for these cells, there was one instance of a guy who grew bone tissue out of his lungs! It was a weird case, and he already had bone problems, but because of that one instance they now schedule MRIs now just to be safe. The MRI wasn't a big deal, but it was *really* loud. They provide you with headphones, but it didn't help much. It was like having a fire engine right next to your head going ENNNNNHH ENNNNNHH ENNNNNHH or BUH BUH BUH BUH BUH BUH BUH BUH, over and over for half an hour. They had piped in Jack Johnson over the headphones, and I'm not sure I'll ever be able to listen to Jack Johnson the same way again.

After the MRI I met with the clinician, who couldn't believe I was doing so well the day after I got out of the hospital and gave me a gold star, then it was off to see the snot guy to provide some snot, then it was over to the nutritionist who also couldn't believe I was doing so well and gave me another gold star. Because things are looking good, I'm only scheduled for SCCA visits twice a week, which is great. All this really boosted my self-confidence, so after I got home I celebrated by walking about 5 miles around the neighborhood and over to Cloud City, one of my favorite coffee shops. The walk felt great, though I had to lather up with lots of sunblock to prevent GVHD issues. I even ordered a short latte and a broccoli quiche, and the coffee actually tasted pretty good. I've been drinking a lot of milk lately, which helps with the calcium and vitamin D that are being sucked from my body by the steroids, so I figured a short latte was basically just more milk (normally I get a double short), and I was curious to see how my stomach would handle the coffee. It was a nice treat. I wore my sunglasses inside when ordering so as not to freak out the baristas, but it was nice to be around normal people for a change, normal people who aren't sick I mean. I still need to avoid crowds, but there are a lot of places I can go. My scheduler, Troy, at the SCCA said he sees people with my bloody eyes all the time, and calls them Gambit Eyes, after the character from the X-Men, so we joked about that for a bit and I didn't feel so bad. My face is puffy and my tongue is totally white now, with the new taste buds growing in, so when I stick out my tongue and open my eyes wide I look pretty freaky.

After my walk I did a bunch of chores around the house to help out Johanna, and it felt good to get back in the swing of things. We hooked up my portable IV pump which provides me with more hydration and some missing minerals like magnesium and potassium that are getting sucked away by the medications, and then watched Lost with my sister and Brian. It was nice to watch TV in HD again on a big screen after watching it on the little TVs in the hospital. The IV pump has a little backpack that goes with it, and I can hear it whirring away by the bed as I write this. If I can hit my goal of drinking 4 liters of water a day, they may taper me off the IV hydration early. That would be awesome.

Tomorrow I'll be walking with Simon around the Arboretum, so that should be fun. I'm looking forward to getting my muscles back in shape, since the medications I'm on are actually promoting bone and muscle loss, so lots of exercise and calcium will be good.

I probably won't be posting as often, since things are starting to settle down a bit, but I'll keep updating as interesting things come up. Ciao!

Tuesday, February 10, 2009

Day +14 - At home!

Here's a picture of me all packed up with my backpack, just before leaving the hospital. Even though the weather was crappy, it was still nice to be outside. My only issue with being in the outside world is that my eyes look so evil! I can see people looking at me funny, and every time I catch a glimpse of myself in a mirror it looks so spooky. They're starting to fade a little, so now they really look blood-red. It's very weird.

Once we got the orders to be discharged, we had to wait around a while to meet with the discharge nurse who let us know what to expect for tomorrow, since I have a full day of appointments at the SCCA, we had to get all our supplies and equipment to take home with us, like sterile pads, gloves and the portable IV pump, and then we had to wait for the pharmacy to fill all the prescriptions. This all took several hours, so by the time we left the hospital it was about 5:30 pm. It was kind of weird to leave, since I had lived in that little room for 22 days. Some of the nurses stopped by to say good-bye and to hope that they don't see me again :), and Erika asked for my blog, which was cool. But it feels so nice to be at home again.

Here's a picture of my prescriptions that I've been taking at the hospital and that I'll need to continue at home. This is only about a 2-week supply, if you can believe that.

This is why it took the pharmacy so long to fill my prescriptions

Here's why we're a bit excited about the engraftment. In the last graphs I posted from a few days ago, you could just start to see an upward trend of white blood cells, neutrophils, and platelets. Well, take a look at the graphs below! The green area is the normal range, and the purple bar is when I underwent the conditioning chemo just before the transplant. We still expect these to bounce around a bit, and in fact, my hematocrit has dropped from 33 to 31, but things are still looking great. The doctors continue to be impressed at how fast the engraftment happened.

So far I'm adjusting well at home, and Johanna and my mom were here this evening keeping things clean and cooking soup for the next few days for me to eat. I'm still rinsing my mouth with the special mouth rinse every few hours, and will be looking for a mile-long route around the neighborhood to keep up my energy.

Happy to be home!

Day +13 - Feeling great, Mesenchymal stem cells

It's late, but I slept about 10 hours today and I find that it's best just to wake up and read or do something instead of tossing and turning trying to sleep. On the left is a picture of me, Annie, Johanna and Joe. You can see how puffy my face is from the steroids I'm taking. The puffiness along with my black eyes makes me look pretty weird, I think, though it doesn't look so bad in this picture.

The docs made their rounds this morning and were thrilled to see the skin GVH mostly gone and the lack of fevers for the last few days. I'm still swallowing food, my mouth is hanging in there, and their faces lit up when they realized I had walked a total of 42 miles in the 3 weeks since I've been here. Since I can still swallow and eat food, they started writing up orders to taper me off the IV medications so that they can be replaced in pill form. In fact, as I'm writing this, I haven't been hooked up to my IV pole since 8pm! This is so awesome, and means I will probably be going home in the next day or so. WOOOOHOOOO!!!!!

Counts are also continuing to go up: platelets are at 214 and ANC is at 5.24! These are squarely in the normal range. We still expect the counts to go up and down a bit in the next few weeks, and the immunosuppressive drugs I'm on doesn't mean my immune system is ready to go out and battle the world, and also because they are infant cells and have no learned immunity, but they sure are off to a good start.

Today I got my first infusion of MSCs, or Mesenchymal stem cells. What, you're asking? Didn't you already get stem cells? Well let me explain. The stem cell transplant I got 2 weeks ago consisted of HSCs, or hematopoietic stem cells. These HSCs can reproduce themselves and are the basic building blocks for all blood components, but blood components only. There are other types of stem cells which are building blocks for other things, such as tissue and muscle. MSCs are stem cells that help regenerate tissue and have been shown to be a big factor in reducing graft vs. host disease. Unlike HSCs, MSCs are universally compatible and don't have to be closely typed. It's a Phase III clinical trial for which I'm eligible, and if it means not having to suffer through several years of GVHD, I think it will be a wonderful thing. I'll be one of 850 people so far in the trial. Essentially the way it works is this: MSCs live in the bone marrow awaiting instruction from the immune system. They interact with the immune cells in your body and react to inflammatory signals in various parts of the body, then leave the bone marrow to travel to the damaged areas and actually help regenerate lost tissue and muscle. How cool is that?

It's a double-blind test, meaning 50% of patients will get the MSCs, and the rest a placebo. Not even the nurses and doctors administering the transfusion are supposed to know. The transfusion bag and even the tubes are covered in dark plastic. But apparently there is a very distinct fishy-smell that goes along with the MSCs that sort of gives it away, and my room smelled fishy all day. So much for double-blind tests! I'll be receiving 6 of these MSC transfusions. What's funny is that I was already zonkered out this morning after walking a mile and sleeping very well when the nurses and trial coordinators came in to administer the MSCs. They started by loading me up with 50mg of Benadryl, which immediately put me back to sleep again. The trial researchers were these 2 guys who were required to supervise the the whole operation, which took about 2 hours, and they stood at the foot of my bed the whole time. So I would wake up groggily and see these 2 dudes standing there, all serious and bored looking, like secret service agents, which I'm sure affected my dreams. At one point there was a cleaning lady in my room, and I remember asking her some random technical question about my IV medications. She just shrugged and kept mopping. I didn't end up waking up until about 3:30 pm, when my parents showed up to walk another mile with me. Then Johanna showed up, we hung out for a bit, and I slept again from 7 pm until 1 am. It was great.

Right now I'm feeling pretty good, with some fatigue, but hoping my recovery is speedy and that the GVHD is suppressed and not debilitating. I've been reading lots of blogs about people at day 80 and beyond who are still suffering from serious cases of GVHD with things like diarrhea every 10 minutes, bad gut infections, and skin rashes that get increasingly worse and don't respond to steroids. Cross your fingers that my GVHD is kept to a minimum with the steroids, and that these magic Mesenchymal stem cells help regenerate any damaged tissue and muscle that's likely to occur.

Over and out!

Sunday, February 8, 2009

Day +12 - Counts increasing, skin rash disappearing

Not much to report. Today was relatively uneventful, which is excellent news. Slept great, no fever, no tossing and turning, woke up with only a minor headache which was quickly resolved with some Imitrex.

The doctors came in to report that all my counts are still increasing, which I am still in shock over. Yesterday my Neutrophils were at 0.8, which was a big deal since they cleared the important 0.5 threshold. Today they're at 2.72! Part of this is due to the steroids, which tends to push new cells from the marrow quicker. We also expect them to bounce around down a little bit, but still! Platelets are also up from 45 to 119! These are some really strong cells, baby. Again, we also expect them to bounce around a bit and they could go quite a bit back down, but so far things are looking very good! I'll put together some more graphs later. One of the reasons they explained that it took so long for my counts to return after my induction chemo, is that we had to beat them down until they were nearly dead, in order to wipe out as many leukemia cells in the process. So those bruised and badly beaten cells took some time to recover. On the other hand, with a stem cell transplant, the chemo dose to the old cells was essentially lethal, leaving no man alive. So instead of waiting for badly beaten cells to recover, the new stem cells were healthy and raring to go, requiring the methotrexate chemo to actually tell them to hold their horses a bit. Now that the methotrexate is done, it will be interesting to watch them go full bore, expecting some up and down bumps along the way mind you.

The skin rash is disappearing thanks to the steroids, and the doctors are keeping a close eye on it. No fevers to report in the last few days, and I'm still eating solid food, though now it's down to Carnation Instant breakfast milkshakes and chicken noodle soups and milk. My mouth is still holding together, but the skin is very thin and flimsy and after I eat there is a lingering pain for about 20 minutes. But, if it can hold out until the engraftment really kicks in, all I have to do is keep what I have left and the the new skin cells will start growing and then I'll be all set. I'm also finding it more difficult to talk, which is annoying.

Yesterday I had a new attending physician named Dr. Deeg, who is highly recognized and is a specialist in MDS, the exact disease I have. The attending physicians rotate out every month, presumably so that they can continue focusing on their scientific research and not spend the whole year doing in-patient rounds. I've had 4 attending physicians so far, Dr. Storb, Dr. Turtle, Dr. Doney, and Dr. Deeg. All of them have high credentials and have been incredibly smart. In fact, Dr. Storb was one of the founding members of the Fred Hutchinson Research Center and worked with Dr. Thomas, the man who developed the bone marrow transplant way back in the 60s and 70s and who won a Nobel Prize for it. Dr. Storb is also really funny and cool, and though he's in his 70s (he doesn't look it), he still kayaks from his houseboat every morning across Lake Union to work. I remember hearing Dr. Deeg's name from as early as June, when my general oncologist would call him up to consult on treatment plans for me, since Deeg is an MDS specialist and is at the top of his field here. So it's amazing having people like Dr. Deeg handling my case, doing rounds and coming into my room every morning to look me over and talk about how things are going. It's awesome to have that kind of care available to you and someone like that inspecting your body and treatment schedule every day.

The docs are starting to taper down the IV drugs so that I can start taking them in pill form, presumably so that can get me discharged. Woohoo! Barring no complications and that the skin rash disappears, it could be soon now. Unfortunately, the evil eye look will be around for another few weeks. The docs don't really care too much about it since it will go away on its own and isn't problematic, so I'll probably have to wear shades for a while or risk scaring off little kids and coffee baristas. Actually little kids will probably think it's cool.

The usual visitors came by today (johanna, mom, dad, cindy, brian), and I got my 2 miles of walking in, so all is well. I think I'm going to get some sleep early for a change tonight.


Saturday, February 7, 2009

Day +11 - Engraftment!

Good news! It looks like the new baby stem cells are growing, which means we have engraftment!! Technically engraftment would have been on Day 10, but I'm still a little cautiously optimistic since I'm worried that it might be my *old* stem cells coming back from near-death and re-growing. But with doctors now thinking that the skin rash is graft vs. host and not caused by the antibiotics, and the fact that different doctors have repeatedly said that I got a pretty large bag of stem cells, they're not surprised that engraftment is happening a few days ahead of schedule. Normally it takes 2-3 weeks to engraft, and apparently mine started on Day 10. Woohoo!!! Since today is Day 11, I was still scheduled for one more day of Methotrexate chemotherapy, used to slow down the new stem cells, so the numbers might decrease slightly tomorrow. But the doctors are happy and things seem like they're off to a good start.

Check out some of the graphs I put together for the recent weeks. The first graph shows my total white blood cell counts. The green bar is the normal range, and the purple bar is when I underwent what they call "conditioning", which is the chemotherapy to prepare your body for transplant. It should really be called "total annihilation" since that's basically what happens. You can see the little white blood cells spike in numbers as they react to this toxic, foreign substance, but they quickly lose the battle. The thing that's notable is the little uplift on the bottom right, as the the new stem cells start producing new white blood cells.

Again, with the neutrophils, one of the white blood components that fight bacteria, you can see the neutrophils multiplying in numbers in anticipation of a fight, then losing all of their soldiers and dropping to 0. Literally. Neutrophils only live in the body for 6 hours, so my chart had said 0.00 for over a week. Zilch. Again, notice the little uplift on the bottom right. A neutrophil level above 0.5 is significantly safer health-wise than a level of 0, so to already be at 0.8 is huge. Granted, this will go down again after today's methotrexate chemotherapy, but it's a good sign that these new stem cells are strong!

My hemotocrit level got a boost as well yesterday. The boost before that at 24 was due to a red blood transfusion. Hematocrit is a direct correlation with how fatigued I get, since the fewer the red blood cells, the fewer the amount of oxygen that can be transported throughout my body. For example, when my hematocrit hit 20 a few months ago, I couldn't stand for more than a few minutes and fainted for the first time in my life. Red blood cells and platelets have a longer lifetime than white blood cells, which is why you don't see them die off as quickly as the white blood cells above. For red blood cells and platelets there will be a period of time when the old and new cells mingle until, eventually, the old ones die off or are attacked and eaten by the new immune system. Poor old stever blood. You did me good up to this point. It's sad to see you go.

I've had two platelet transfusions so far, as you can see in the little upticks on the right (the first uptick happened by itself), but the uptick at the end is the one that's interesting in that it also appears to be from the new stem cells.

So all blood components so far are seeing some activity. This is great news! I'm still slightly worried that these are my old stem cells coming back from being near-dead and finally coming round. But after asking that question to a bunch of doctors and nurses, they're more and more convinced this is engraftment. Besides, they tell me, "the chemo you got was lethal for a reason. If you didn't get those stem cells, you'd be getting daily transfusions just to keep you going. Your old cells didn't have a chance." I knew that all along going into this, but part of me always wants to be cautious before getting too excited.

It's also been my first full night and day with no fevers, thank god, so that's real good news. Though this could be partly due to the steroid called Prednisone that I'm now taking, which masks fevers, and will be taking for a while to help with graft vs host. The skin rash seems to be dissipating, and in general I'm feeling pretty good. Last night I was really worried since I had a lot of trouble swallowing water since my throat was swollen and filled with mucus, and there were also areas in my throat that were bleeding. As I tried to sleep I was about to write off eating food altogether, I felt so miserable, and was tempted to switch to the IV nutrition after all, as much as I didn't want to. But this morning I tried again with ice water and magically it was almost like drinking normally again. There are still a few bumps down there, but it was nothing like yesterday. So I was actually able to drink 2 of those 470 calorie milkshakes, eat a bowl of campbell's soup, and drink some gatorade and lots of water. Whew! It's possible that my counts coming up are causing the improvements, and that would be just in time, let me tell you.

My evil eyes are still dark, dark red, and the docs say it won't go away for another couple of weeks. It's totally painless, and doesn't affect my vision, but still gives me a start when I see myself in the mirror. What's eerie is that when I see them, it just looks like they're all black, since the flash of the camera is what makes it look red. So I can't even really see where my eyes are looking at. It's just a strange sight to see. I've taken some pictures, and maybe I'll make some Halloween masks for next year :)

Our friends Joe and Annie stopped by and helped me walk my 2nd mile, and they picked up food for Johanna who'd been with me most of the day, and we all had a good time chatting about random stuff.

That's about it for now. The next thing to watch for now that the engraftment has started is more graft vs host issues, like skin rashes, gut diseases, liver and organ issues, etc. It's a delicate balancing game to make sure the new stem cells have enough leeway to take over, but not to give them enough control that they might start attacking the host body, me. Since my donor is a 9/10 match, we very much expect to see more GVH issues. Roughly 50% of patients will get GVHD (my statistics are higher), and they'll usually be fully resolved in a 5 year timeframe. The other thing to remember is that my immune system does not have any learned immunity from the donor, but rather the immunity of a freshly born baby. And so, for the next year, I'll have to be very careful not to get things like the chicken pox, the measles, etc. At one year after my transplant I'll even go in for vaccinations just like a baby gets. I think of it as like installing a fresh copy of Windows XP, and than scrambling to get all the security patches and fixes installed before getting hit with a virus.

So keep your fingers crossed that these are real donor cells and that they keep going going going! We won't absolutely know for sure until Day 28, so it will be a kind of tense waiting game!

Friday, February 6, 2009

Day 10 - Evil eye day

guest post by Johanna.
I'm gonna call this day 2 of Steve feeling miserable. You all know he holds up pretty well but I know he's suffering when he uses the word "miserable". His throat hurts and the mucositis was bothering him so much last night that he coughed until he threw up. Then he was so sad that the food he worked so painfully hard to eat was lost. This also caused the small hemorrhage in his eyes to worsen so you can't see any more white (Steve's evil eyes). Though this can look scary it's harmless, doesn't affect his vision and should go away in a couple weeks.

The following pictures are linked for your viewing comfort- not for the faint of heart!

Steve's doctors rounded this morning and continued the discussion of his rash, which they are now starting to believe may really be graft vs host (GVHD). After some discussion they started him on a steroid for the rash and came to take a skin biopsy to see if they can identify it as GHVD.

Steve just relayed the skin biopsy story to me and it goes like this:
"They came in and I was lying in bed sleeping and they tried to find the most concentrated area of rash. They cleaned off my whole arm and drew a circle the size of a pencil eraser and numbed it with lidocaine. Then the took out this tool, and said I'd feel some pressure, which I did, and they kept pushing and took out this core sample of the skin on my arm. And I looked over and there was a little hole in my arm filled with blood." Now I'm laughing at this story, which is sick, but he insisted I tell the full version and that cracks me up. Steve wants me to add that he'll probably have more skin biopsies in the future.

To take care of his mouth pain they gave him a fentanyl pump that he can press to help with his mouth/throat pain. At first Steve wasn't sure if it was helping but then he realized he could swallow without pain. Also the steroids give Steve the munchies which helps him want to eat- so being able to swallow a milkshake (or 3!) is really nice. Steve asks "Is it wrong to be on narcotics?" I think this is something we can let everyone comment on.
Later on they told Steve about a phase 3 clinical trial for Prochymal that Steve could participate in and sent a nurse by to talk with us about it.
After adjusting to his pain pump and having the steroids kick in, Steve's mood improved considerably. Cindy, Brian and Bev visited and we watched Baby Mama on the tv in his room.

two extra carriage returns just for Steve's viewing pleasure!

Thursday, February 5, 2009

Day +9 - Full-body skin rash, more mucositis

Not much to report today. The docs still think the skin rash is the result of the Imipenem antiobiotic, and we're just waiting to see if it goes down now that we've swtiched to a different one. Oh, and now I'm developing some kind of nasty pink eye at the top of my eyes.

Felt like crap most of the day, as I suffered through a couple more fevers and my mouth is increasingly feeling more painful. Swallowing water takes some work. Hopefully I can stick it out for just a few more days when the new stem cells start growing, which should improve the situation.

Johanna, my mom, and Val hung out with me for most of the day. My mom took Val to the airport in the afternoon to catch a flight back to Los Angeles. Johanna stayed with me through the rest of the day and helped me get breakfast, lunch and dinner down. We also walked another 2 miles around the floor.

It's sort of gross to observers, but the little suction wand to clear out all the extra mucous from your mouth really helps. If you can believe it, the jar is almost half full. Disgusting! The purpose of the saline rinse is to help thin it out and make it less acidic, but at this stage of the game I'm producing mucous with a vengeance.

Johanna and I watched a few more episodes of Monk, and we finally caught up on Lost again. I had fallen asleep during one of the recent episodes.

Brian's mom recently sent him my astrology horoscope for the last week, which is totally fascinating and inspiring given my current circumstances:
From the 26th through February 4th, Jupiter Trines Steve’s Pluto, giving him positive energy for regeneration.

"You have a strong desire to reform and remake your life at the cellular level at this time, and you should be striving to improve conditions surrounding you, to renew and to serve as a vehicle for regeneration in your world. Use your personal power to clear up and clean out. Expect to be offered a chance to lead or influence others, so use that influence to help everyone and everything concerned to join together and grow with you.

On the mundane level, this influence coincides with success and tremendous gains in personal resources. On a more humble level, it can give you the chance to straighten out any type of situation in your life that has been source of trouble for you. Widespread success will permeate your life fully."

Wednesday, February 4, 2009

Day +8 - Blood and platelets, skin rash intensifying

Feeling off and on all day today. I got 2 fresh bags of red blood cells this morning since my hematocrit finally dropped below their threshold, from 27 to 24. This might explain why I was so fatigued yesterday, but even after the red blood cell transfusion I still feel pretty week.

The main issue right now is that I'm developing a skin rash over my whole body. It doesn't itch yet, but the docs don't like the look of it since it's getting worse, and also because it's not graft vs. host disease, which means it's coming from somewhere else. They suspect one of the new king-kong antibiotics I'm on (Imipenem) and switched me over to Aztreonam which should supposedly protect against the same things that the Imipenem did, but without the rashes. Rashes from GVHD are expected, but not until my new cells start engrafting, around Day 14 - 21.

Johanna, my mom, and Johanna's sister, Val, all stopped by today to help get me going and give me words of encouragement. I didn't get my full 2 miles in today, but walked 1.5 miles which felt pretty good.

The other new change is that they detected c.diff in my stool, which can happen when people have no immune system. C.diff is a bacteria that lives in your gut, and a normally healthy person won't ever suffer from it. If the immune system is compromised, the c.diff bacteria can take over and actually cause the disease called c.diff, which includes diarrhea and stomach cramps. So because mine is on the attack, I'm under what's called "Contact Isolation", which means the nurses and anyone who enters my room has to wear a gown and gloves. This isn't to protect me from them, it's to protect them from me spreading c.diff to other patients! So now I have to wear a gown and gloves during my walks. It's sort of funny that I'm the one that can infect people for a change, and not the other way around.

Had several high fevers again today, around the 102.4 range. Hopefully the new antibiotics will kick in to help this out. This, and my worsening mouth, are perhaps the most uncomfortable parts of the day.

Breakfast (cereal and milk), lunch (high-calorie protein shake) and dinner (Ivar's clam chowder) all stayed down today, so I'm happy about that. One of the nurses hooked up a little suction wand, sort of like the one dentist's use, to help suck out the increasingly annoying amount of mucus and saliva that keep building up in my mouth. This is much better than using a spit cup, as I'm finding I need to use the wand about once every 15 minutes. Annoying. But satisfying afterwards.

After dinner, the nurses brought in another bag of platelets since my counts had fallen below the threshold again (the threshold is now 20), so I was really zonkered after taking my normal Ativan and then getting 25mg of Benadryl. The Benadryl nap was great, and I woke up a few minutes ago to write just a little bit before attempting some sleep. Wish me luck!

Here's a picture of Erika and Tyler (two of my nurses), my mom, and Val all gowned up.

Tuesday, February 3, 2009

Day +7 - CT head scan was good, more high fevers

First off, yesterday's CT scan of my noggin came back squeaky clean. Hooray! I was a little more worried about this than I realized. Part of it has to do with the fact that we've never scanned my brain, and I always had this nag that we should, just in case there was a tumor. A fellow blogger with leukemia had been diagnosed for a year, and it wasn't until doctors at the Hutch heard from her that she'd had some vision issues long back, that they ordered a brain scan, and lo and behold, found a tumor. So each time I get a bad migraine I always worry that maybe there's something going on up there. So getting these results relieves a nag I've had for a while. They also saw that my sinuses were totally clear and free of infection.

Johanna stopped by to get my day started, and though I was hungry, it took quite a bit of effort to eat a bowl of Raisin Bran and peaches. What's happening is that my mouth is desperately clinging on to the remaining cells lining it, but that lining is getting thinner by the day. I can see blood vessels and nerves threading around it now, so it's really thin. And painful in places. But the diligent mouth rinsing and keeping it clean has paid off, and other than a little bit of pain, I still don't have any ulcers or infections and I'm able to get food down. Right now my winning combination of food that meets the criteria of still tasting good with my dying taste buds, having enough calories and protein, and soft enough that it doesn't cause too much pain are Ivar's clam chowder, raspberry jello, hard-boiled eggs, milk, high-fiber chocolate shakes, and sufficiently soggy Raisin Bran. Not a huge selection, but enough to keep me going. My nutritionist wants me to get at least 1,200 calories and 50 grams of protein a day. If I'm diligent about taking the anti-nausea meds before I eat and make sure to order food even when I feel like crap, I can usually meet the goals. In fact, I've been gaining a couple of pounds in the last few days.

Val flew in from Los Angeles today and cabbed over to the hospital to hang out with me for a bit. We walked another mile around the floor before being joined by Rachael and Nic, who we chatted with a bit until I was briskly whisked away by the radiologist for a CT scan of my lungs. Nic gave me a "medal" from the last marathon he ran. These are usually cute, home-made little items, and Nic had created a medal out of a beer coaster and nylon rope, since he actually organized this last race. Totally cool! By the way, I've mentioned it before, but Nic is undertaking a herculean effort of running 13 marathons in 12 weeks, and he only has 1 marathon to go! He's raising money for the Leukemia and Lymphoma Society, a great resource that has helped us. If you haven't donated yet, there isn't much time left. See if you can help him reach his goal at

The snot guy came again today and collected more snot. For the little device that measures how powerful your lungs are, I beat my record over last week by expelling 4.5 liters of air in 1 second and 5.2 liters total over the remaining 5 seconds. I'm shooting for 6 liters, since they've never had anyone on the floor get that high. My lung capacity is around 7 liters based on the tests we did at the SCCA, so it should be possible :)

Last night was pretty rough. No headaches this time, but I spiked a fever of 102.8 during the night. Having a high fever at night is a tough thing to get through. As you try to sleep, it starts with waves of shivers and then soon turns into uncontrollable shaking chills. I turned up the temperature in the room and then huddled under the blankets, waiting to warm up to whatever new temperature my brain had set its internal thermostat at. After an hour of this and feeling totally uncomfortable, restless and helpless, the shivering slowed down and I finally felt warm again. But my heart rate was running at 95 bpm, way higher than my resting heart rate of 60. It's impossible to sleep in this state, since the high temperature and fast heart rate make you incredibly anxious and can cause you to be delusional. It didn't help that I had just finished reading Into Thin Air that night, so I had dreams of cold weather tents, high-altitude sickness, and and an urge to help my fellow climbers. Other weird dreams I've had during fevers are feeling like my body is scattered all over the place, running as separate systems, and it takes a second when I wake up and look down and realize there's just one body, me, in the bed.

So I rang the nurse and said, "I think I'm running a fever", and 102.8 it was. She gave me Tylenol, which helps drop your temperature back to normal over a couple of hours. It's funny, but whenever I'm recovering from a high fever and am back to normal temperature, I feel on top of the world! Seriously, I feel 100% perfect. The cool air feels good, I have energy, and my head is clear. It's like hitting a reset button. I had my 3rd high fever of the day today just a few hours ago, and after notifying the nurse and getting Tylenol, again I feel great right now. Maybe it's the intense workout of your whole body shivering and having a high heart rate. The docs say the new antibiotics will take a few days to kick in, so hopefully we'll be done with these fevers soon. They really aren't very fun to deal with.

Other than that things are going pretty well. My calf is no longer sore, and my blood counts are exactly where they should be. I'm still walking 2 miles a day, able to eat solid food, and my mucositis is a grade 1 out of 4. The only issue besides the fevers is a small skin rash on my hand that the docs are monitoring. It itches occasionally, but it's not bothering me much. It looks pretty terrible though. See what you think.

Monday, February 2, 2009

Day +6 - More fevers, brain scan, losing hair!

That's me on the left feeling pretty well, in front of my increasingly large number of pictures and comfort stuff. Unfortunately, I didn't feel that way much of the day today. With my counts dropping, I've been getting more and more tired and have been sitting down or sleeping most of the day. This morning's mile-long walk felt like climbing a mountain. But we're on Day 6 and things are still going relatively well.

This morning when I rinsed my mouth, I saw a fingernail-sized piece of skin in the sink. Uh oh. The oral medicine woman said it probably came from somewhere in my throat, since she couldn't see anywhere it would have come off inside my mouth. She gave my mouth an A+ for being at Day 6 with a mouth this good. Woohoo! My tongue and cheeks are turning a whitish color, and she explained that this is because the cells in the mouth completely replace themselves every few weeks. With the chemo, all those fast-growing cells are essentially disabled, and my mouth is clinging to what little skin and cells it has left. The taste buds are slowly dying, so I'm losing taste, but I'm still able to eat food with some effort.

I spiked a couple more fevers over 101 today, so the docs ordered in the big guns of antibiotics, Imipenem and Vancomycin. I've been on an antibiotic called Ceftazidime, which is what they start all transplant patients on. The transplant protocol from Fred Hutch dictates that patients be switched over to these 2 more powerful antibiotics once they start getting fevers. Since my neutrophils are now at 0.00, this is par for the course.

Last night I had more headaches, and I figured out the right dose of Imitrex that will get rid of the headache but not cause those annoying bone pains in my feet. Trying to balance all this stuff out can be a pain, especially at 4am when you're suffering from an excruciating headache. The docs are still convinced that the headaches are caused by the Tacrolimus immuno-suppressive drug that I've been on since I got here, 24 hours a day via IV drip. But just for good measure, they sent me down for a CT scan of my noggin. I haven't heard the results yet, so hopefully it's all clear. I should know by morning.

Oh! So today while I was sitting in my fancy new recliner, a gift from one of the nurses who brought it over from a recently vacated room, I noticed a funny sensation in my beard each time I bumped it. Well, I grabbed a few beard hairs between my fingers and they came right out! I expected this to happen sometime next week. My head hairs seem to be coming out too, but Johanna and I shaved my head a few days ago so it's hard to tell. So I quickly shaved off my beard, and now I shouldn't have to worry about shaving it for the next few weeks. Oh joy for those little bright spots in my life :)

Unfortunately, my intestinal tract is starting to fall apart, as expected, and this is making it hard to keep food down. I wasn't very successful with lunch today, and was only able to get halfway through dinner. The problem is that the chemo affects all the cells from your mouth to your butt, and the result is more nausea and other unfriendliness like stomach cramps. I was hoping to be able to eat solid food the entire time, but at the rate things are going it's starting to go downhill quickly. My oral mucositis is still in good shape, but if my intestines and stomach don't want to play nice with food, there's not much you can do. I'm hoping to be hungry for breakfast tomorrow morning, so we'll see how it goes.

That's it for now!

Sunday, February 1, 2009

Day +5 - Platelets, fever

Guest post by Johanna: Steve awoke this morning to find a bag of platelets waiting for him. His counts went down to 11 early in the morning and their threshold for transfusion is 10. To prepare for the platelets, Steve was given a bunch of benadryl which put him back to sleep until the early afternoon, and then he felt awesome! He got a late start on breakfast but still walked a mile with me and then I gave him a haircut. This afternoon Cindy and Brian visited and they played with iPhoto and the new "Faces" feature and they walked his second mile with him.

Now Steve has his second fever (101-over the watch and wait limit) so they are giving him tylenol and taking cultures. I'm glad he doesn't have the chills right now. He has a mild headache but I think he'll beat it easily since he's already had his Ativan and is all cozy in bed early.

Tomorrow will be Steve's official 2 weeks in the hospital. I'm celebrating this by preparing (slowly) for him to come home by starting a thorough cleaning of the house. It feels kind of strategic since I have to consider what things can be done last minute and what takes scheduling. Once all the major cleaning is done I will still have the day to day sanitizing to adjust to and the careful food prep, so it's nice to do some things in advance.

I can hardly believe it's February. The garden show is coming up and there is some sign of life in our yard- one yellow crocus came up so far.