Day +4 - Chest x-ray, new migraine medicine

Not much to report. Walked 2 miles again today. That means I've walked 26 miles total since I've been in the hospital. A marathon! Today I definitely noticed more fatigue after finishing each walk, and in general during the day. My hematocrit is at 28, and they'll do a red-blood transfusion once it drops to 26, probably early next week. Neutrophils are at 0.01, and platelets have dropped to 26. Feels like old times, looking at these low numbers, since those are the numbers I have been living with for most of last year.

The new Immitrex migraine medicine works great. I took some last night after ending up with another excruciating migraine, and it killed the headache cold in about an hour. It wasn't funny then, but the worst of my headache was happening right when the visual effects of the voriconazole were kicking in, which for me consists of light sensitivity and pulsating lights that blink behind my eyelids. So here I am trying to get the room as dark as possible because my head hurts, and then when I close my eyes the whole world is flashing like a strobe light, which is made even worse because of the light sensitivity! Ugh, it was a mess. But the Immitrex was great stuff and knocked it out cold. Except that it's causing some minor bone pain around my shins that goes away quickly, so it's worth it. Last night the bone pain happened while I was sleeping, and I remember part of a vivid dream where I thought my feet were being harvested or re-attached. I remember waking up and checking that they were still there!

I had a routine chest x-ray to check for fluid in the lungs, which is common when you're bed-ridden and don't get up much. Luckily I was given the chance to walk to the x-ray room instead of being wheeled around in a bed, and it was nice to sort of "get out" and see some of the other parts of the hospital.

Lunch today was the first meal where the mucositis I'm slowly developing started to become a problem. I'm still doing phenomenally well, according to the doctors and oral medicine folks, but have started developing some canker sores along the rear edges of my tongue, and some lesions in my upper gums. The canker sores make it painful to move your tongue while eating, like picking food from your teeth and all the other stuff your tongue takes part in. But my appetite is still there, and the nausea is being kept at bay, so things are looking good :)

My dad stopped by after checking out the Chinese New Year parade in the International District, and brought the new version of iLife with him. I'm excited to try the new iPhoto with its face-matching and geo-tagging features on our 20,000+ photo collection. Cindy and Brian stopped by just before my dad left, but I ended up sleeping the whole time they were here since we had just finished another mile-walk around the floor and I was exhausted. Sorry about that!

Today I had a small fever of 99.8 for several hours before it went down. The doctors expect fevers, and this one wasn't enough to worry about. It's notable since up until this point my temperature has been perfectly normal.

Johanna is finally feeling better, and was well enough to stop by tonight so that we could hang out and watch Monk. She's had a cold for the last couple of weeks and has been playing it safe to make sure she was 100% over it before coming in. Yay!

Day +3 - Bicycle bell, sore calf, some mucositis

Rachael, a friend of ours who works at UW Medical Center, stopped by and had this great gift for me, pictured on the left (click to see a bigger version). It's a coffee cup-shaped bicycle bell!! We had been joking that I needed a bicycle bell for my IV pole, for those times when I'm walking the halls and get stuck behind a bunch of residents and doctors. We fastened it to the pole and it works great. How cool is that? Looking forward to my next walk :)

Last night I had a great night of sleep. I only woke up once at 6:30 am for vitals and again at 8 am for some other reason. The Ativan anti-anxiety drug is definitely the key to a good night's sleep. I asked the nurse to put it on my orders which will cause them to ask me each night if I want it. This way I won't forget like I did the other night, and ended up tossing and turning until morning.

My calf is still incredibly sore, and last night the nurse came by with a water pump and heat pad. The pad is basically a sheet of plastic with thousands of narrow channels for water to circulate. The pump heats the water and then circulates it through the pad. I tried it for a few hours last night and it helped a little bit. This morning I woke up and it was still very sore and sensitive to the touch. I limped a few laps on our morning mile walk, but by the time we'd finished it was limbered up and feeling pretty good. Though it's become incredibly sore again after resting it for a while. The doctors tested my blood for muscle problems, which I didn't even know was possible, and reported today that they all came back negative. The most likely explanation is that it's a result of the chemical imbalances taking place in my system, and that a cramp I might have had is just taking longer to recover because of it. In the grand scheme of things it's not a big deal, it's just surprising that it would be sore this long.

The oral medicine woman came by again to inspect my mouth for mucositis. She said it looked really good, but that some mucositis was starting to appear, but that it was relatively minor and didn't consist of any open lesions or ulcers. Woohoo! I'm starting to notice some of the mucositis symptoms that I had last time, like tenderness when I move my tongue around and increased sensitivity around the gums when I brush my teeth, so keep your fingers crossed that it stays relatively minor and doesn't go into full-blown hell. Last time I was unable to eat or hardly drink by this point, so I'm doing 100 times better this time around. Just recently I found out that the oral medicine woman is a guru on this kind of stuff, and works closely with Dr. Schubert, world-renowned as the leading expert on oral mucositis as a result of stem cell transplants and cancer treatment. I continue to be impressed by the highly-credentialed staff here.

The 2nd dose of methotrexate chemotherapy was administered today, again in a small syringe. This is to prevent the new stem cells from growing too quickly and potentially becoming overly hostile, and giving them time to acclimate to their new environment and set up shop. The next and last doses will be on Day 6 and Day 11.

I'l leave you with an absolutely hilarious and touching comment that was posted by my friend, Simon, the day I got my new stem cells.

To Steve's new stem cells:

Thank you so much for leaving your home, your family, taking that long flight (aren't those airline seats just the worst?) and enduring the indignity of being pushed around through needles, bottles and tubes. But I think you're really going to like your new family. Stever's an awesome guy, and he's always up to something fun and exciting. There will be scooter riding (which, lemme tell you, is *hella* fun), walks, coffee (you little guys do like coffee, right? Right!?!?) and all sorts of fun, crazy adventures. You'll get to learn some new languages. OK, they're not really languages, but we geeks like to think that they are. Think of all that time in front of the computer as down time. Relax. Find something fun to do, like, oh, make new white blood cells! Yeah! You guys love doing that!

You're really going to like the rest of Steve's family - they're wonderful people, who are so grateful that you made it here. And of course there's the amazing Johanna, who will love you just as much as Steve does.

Because Steve and Johanna are such fabulous folks, they of course have lots of friends, who are now your friends too. Feel free to add us on Facebook - we'd love to be friends with you. And if you ever want to hang out, or want to go check something out in your new home, or grab a meal, just let me know and I'll be ready to go. Especially if you convince Steve to come along on his scooter.

So go forth little stem cells, and multiply. Good luck getting settled in your new home, and please don't hesitate to call, text, email or even send smoke signals if you need anything.

Your new friend

- Simon

PS. Happy Birthday Stever!!!! :-)

Day 2 - Blood clot in legs?

Last night went better, but I forgot to take my usual dose of Ativan, an anti-anxiety drug, that helps me sleep. I didn't have a headache last night, but I tossed and turned until about 6 am before realizing I hadn't taken Ativan the night before. Crap! It probably also didn't help that just before going to bed I stumbled across a blog about a guy who had undergone a cord blood transplant, and how his mucositis started on Day 3. It's day 2 for me and last night I started getting that "funny" feeling in my mouth. So being paranoid about that and the lack of anti-anxiety drugs probably contributed to all that tossing and turning.

Around 8 am I finally dosed up on the Ativan, and right afterwards Val came by to get me up, breakfasted and walked. Well, that made for quite a groggy morning :) I caught enough sleep throughout the morning and afternoon so that by about 3 pm, I was well rested.

When the doctors came on their rounds this morning, I mentioned the soreness in my right calf that had been bothering me since last night. It felt like a cramp, and I didn't think too much of it, but since the chemotherapy and bed rest can lead to increased risk of blood clots, I wanted to point it out. They prodded my calf a bit (ouch!) and scheduled an ultrasound for that afternoon. The ultrasound guy came by with a huge machine, and spent half an hour tracing all the veins in my leg from my groin to my foot. Every so often he would make a note and take a snapshot for his report. You could clearly see the skin and muscle tissue, and where the veins snaked through. Along the way, he would squish a vein closed to measure its elasticity, and would also use artificial coloring to show which direction the blood was flowing (e.g. red for vein and blue for artery). Everyone once in a while he would dial in to a vein, and then hit a button which would cause the sound of the blood flowing through it to come out of the speakers. It was really interesting.

His conclusion was that there was no blood clot currently, but that a blood clot had likely occurred in the past, causing the thickening of the vein wall that he was observing. It was also on a shallow vein, so it was less important than if the clot had been in a deeper vein. He also observed the same thickening on the other leg, indicating a clot in the past there too. You could see that the walls were thick when he squished it and it didn't compress much.

Check out the quick iPhone snapshot I took. The thumbnails on the right are places he documented for his report. The area at the top left is the current ultrasound location, and you can see the artificial blue coloring indicating an artery. The waveform below is a real-time sound of the blood pumping through the artery.

Day 1

Not much to report, except feeling like crap last night. Skip forward a paragraph if you don't want to hear me complain about it. Around 9 pm I started getting a headache, so I asked the nurse for some Tylenol. Unfortunately Tylenol rarely works for my headaches, but with my low platelet count I'm not allowed to get Excedrin, which usually does the trick. The headache got worse, and by 10 pm I was in agony. I hate getting headaches, and they feel especially worse when you're confined in a small environment. It was one of those headaches where it becomes impossible to sleep or rest in any position, and it feels like someone drove a nail behind your eye. Light, sound and movement all trigger the pain, and it's impossible to make go away. For me, headaches also lead to intense nausea, so I knew I needed to resolve it before it got out of hand. Unfortunately, another side effects of headaches on me is that it has a big impact on my motivational skills. My tendency is to just curl into a ball with my head in my hands and stick it out. Luckily, the small voice in my head reminded me that I needed to do something about it, so I got on the horn again to the nurse and asked for something stronger. She called the doc and he prescribed oxycodone. Even the lights on my IV pump were giving me shooting pains. Once the oxycodone went down, I hunkered down again and started feeling the nausea come on. I've had oxycodone in the past, and it's given me nausea before. But it was worth it. After a few rounds of vomiting and getting my mouth all cleaned up each time (to avoid the nasty mucositis mind you), the headache finally started dissipating and the nausea cleared up. Puking in bed sucks. You're supposed to use the little pink bucket by the bed that's specifically for this purpose instead of running to the toilet, since they need to measure the fluid output of the vomitus. Fun.

So this morning I woke up with a small headache still there, but by the time I'd eaten breakfast and did another mile lap around the hospital floor, it was all cleared up. Thank god. I think the problem was partially the lack of sleep I had yesterday, but with all the different medications it's not uncommon to have side-effects like that. Almost every medication and IV drug I'm taking lists nausea and headache as a side-effect, so it's amazing that I even feel good at all sometimes pumped up on all that stuff. The doctor wrote an order for imitrex, which is a migraine medicine, so we'll give that a shot next time.

The methotrexate chemotherapy drug that was given this morning went fine. The purpose of this additional chemotherapy is to slow down the growth of the new stem cells so that they don't become hostile too quickly. It's given on days 1, 3, 6 and 11, so this morning was the first dose. I was a little concerned about more chemotherapy, but the amount is really tiny. The nurse came in with a syringe about the diameter of a pencil, and it was only about an inch full. They don't really anticipate any side effects from these small doses.

The neutrophil count today is just about 0, at 0.01, right where it should be. Having very low neutrophils like this is where it starts getting tricky to keep from getting infections, since even at levels below 0.5 you run the risk of getting infected by your own bacteria. I've been feeling minor chills go over my body every once in a while today, and this is consistent with how it felt last time. It's sort of that ominous, sickly feeling that you get sometimes right before a cold comes on. The doctors expect fevers and infections, so each day past the transplant where I don't have a fever is another day in the bank.

A follow blogger named Michelle recently had a cord-blood transplant a few months ago right here in this building, and she's doing great, though even on Day 69 she's still battling a few viruses and carries her IV pump around with her. Hopefully the time will fly by fast, but Day 1 went by pretty slowly and it sure seem like a long way away to be thinking about milestones like Day 28, Day 50, and Day 100. That's all of February, March and April.

Today I hung out with my dad in the morning, then Johanna's sister Val came by and joined me on my afternoon mile-walk in the afternoon. I'm reading Into Thin Air which is a page-turner, but chose to put it down and get a few hours of sleep after dinner to prevent any headaches tonight. Cindy and Brian came by to watch Lost, which was totally confusing since I don't remember much of last week's episode. Time to catch up.

Over and out.

The waiting game begins

I woke up this morning feeling great, in fact I'm feeling better than I've felt all week. I complained again to my doctor that it makes me a little nervous that I'm feeling so well, since I keep thinking it must mean that the chemotherapy didn't hit me very hard. She reassured me that everything is going great, and that I should just enjoy the fact that I'm feeling well. She pointed out that my counts are still dropping, and that my neutrophil count is at 0.07, which is very low indeed, which means the chemotherapy is definitely working. So I guess I'll just enjoy myself and not worry so much :) The other side-effect I'm noticing from the counts getting lower is that my hematocrit is decreasing, which measures the percentage of red blood cells to total blood volume. When hematocrit goes down, there aren't as many red blood cells to carry oxygen, so your heart beats faster and it's easier to get fatigued. I'm starting to feel the effects of this today.

Today they took down the warning signs in my room which warned nurses to gown up and use eye protection when emptying my urinals, since there was still a toxic amount of chemotherapy being released from my body. One of the nurses said that the amount of chemotherapy in my urine was more than some breast cancer patients were subjected to. Crazy. So I guess my body is clear of chemotherapy toxins now. Except that the sign will go up again tomorrow since I'll be getting a dose of methotrexate tonight, and another 3 doses over the next 10 days. Methotrexate is another form of chemotherapy. The purpose of giving it now is actually to slow down the growth of the new stem cells. Strange, right? Well, with mismatched stem cells, meaning, the stem cells came from someone else and not me, there is a risk that graft-versus-host may come on suddenly once the stem cells start growing. Slowing down this growth helps the little stem cells set up shop and get more acclimated to their new environment so that they don't find it hostile right away. Even with a perfect 10/10 match (I'm only a 9/10 match), there is still a risk of GVHD, since there are always some minor differences between the blood DNA.

The other downside to methotrexate is that it can also cause mucositis, so I'm still doing everything I can to prevent it. Over half of all cancer patients develop oral mucositis so badly that it requires their chemotherapy doseage to be reduced, impacting the patient's prognosis. The main problem with mucositis is that it's so painful that it can become impossible to eat or even drink water, which then causes infections and weight loss, which then causes further problems. Food also tastes terrible since the taste buds on your tongue are essentially wiped out, so trying to prevent mucositis is extremely worthwhile to one's well-being. For good measure, I just now rinsed my mouth again with the special mouth rinse.

The snot guy came today to measure my lung capacity and collect some snot. This is another clinical trial I signed up for that not only helps the researchers, but helps me as well, since the snot they collect is analyzed for infectious diseases and in some cases have warned doctors of a virus a patient has before the patient exhibits any symptoms. All I have to do is exhale into a little device, then sit there as the tech guy squirts a saline solution into my nose and collects the results. The little device measures the amount of air you exhale, and I had the best results on the floor today - 5 liters of air. He said they've never had anyone in the hospital do 6 liters, so it sounds like I have a challenge ahead of me :)

Johanna's sister, Val, flew up from Los Angeles today and will be in town for a week, which is cool. She's a real trooper for leaving sunny California to visit us up here, since the weather in Seattle right now is terrible! This afternoon Val came by and hung out with me at the hospital, and we walked a mile around the hospital floor and caught up on stuff.

Now that the transplant day has passed, there's not much to do except wait for the new cells to engraft, keep from getting mucositis, and keeping clean and preventing infections. It will take 2 to 3 weeks for the stem cells to engraft, and there is still about a 30% risk that they won't, which would mean that my current cells grow back enough and end up killing off the new stem cells. The bummer part is that we won't know whether this has happened until Day 28, the day we do another bone marrow biopsy and tests are run to see exactly what percentage of donor cells versus host cells are still in the body. So this is why it's just a waiting game, and for the next 28 days we just have to cross our fingers and hope the new little stem cells start doing their job.

Here's a little chart showing what to expect through Day 100 and beyond:

Transplant!!

I'm pretty tired, but just wanted to write that the transplant is underway and going well! It's actually happening as I type this. Unlike an organ transplant, a bone marrow transplant is simply a blood transfusion, except that the blood consists of pure stem cells, not mature blood components like white cells and platelets. The stem cells know that their place is inside the bone marrow, and they automatically migrate there after entering the bloodstream. No direct injections into the bone are needed.

Johanna, my parents, Cindy and Brian showed up around 11 pm, since we had received word that the cells might be here early. It turns out they didn't show up until 1:30 am, so my parents snoozed for a bit while the rest of us chatted and watched Roscoe Jenkins on the hospital movie channel. We munched on the cupcakes Johanna had made for the event. The nurse was great and kept us up to date and fired up for the big moment. She even chilled some ginger ale for faux-champagne toasting!

The next we heard, the courier was waiting for a taxi from the SCCA and the stem cells arrived a short time later. They came in a normal, everyday picnic cooler. After cross-checking the paperwork and double-checking records, the transfusion was officially started. Everyone sang Happy Birthday and I opened a few cards from my family. My parents had brought a couple of balloons, so my mom tied them to the ends of the bed. We toasted with the ginger ale, took some pictures, and then everyone headed home for some sleep. Poor Brian has to be to work at 8 am tomorrow, so it was neat that he stayed up.

Even though it doesn't carry the weight of a big procedure, it's still an exciting and momentous event that has been in the works for 6 months now, from being diagnosed back in June, going through several rounds of chemotherapy and blood transfusions, searching for donors, finding just one out of 10 million that matched, and the rest of the events leading up to and preparing for this day. I'm just really happy that everything is going as planned, and especially grateful that the donor was willing to step up and do this and help save my life. Not only did she have to endure several medical tests and blood draws, she has been taking injections for the last several days to push her stem cells into her peripheral blood, then spent several hours yesterday morning hooked up to a machine giving blood. I'm so grateful for her for doing all that, and am trying to figure out what I want to say when I get the chance to write her.

Here are some pictures from the night's event :)


Waiting for the cells to show up


Nurse Erika begins the transplant!


All the nurses sign a little card :)


The tiny stem cells appear as little particles in the tubing


Happy Birthday to me!

Counts finally dropping

I just got my latest blood counts, and the numbers are definitely trending downwards. On the left is a plushy red blood cell which I've got hanging from my IV pole to celebrate. Platelets are at 72 and white blood cells are at 0.7, not as low as they've ever been, but steadily dropping. It's weird to be cheering for them to go down, but it makes me feel a little better since it means the chemotherapy is doing its job. I was getting a little worried that I might be *too* healthy (haha yeah right) and that the chemotherapy might not have been strong enough. But based on the drop in white blood cells from just yesterday to today, I don't think I need to worry anymore.

Take a look at the charts below. The purple bar on the left was when I had induction chemo a few months ago, and the purple bar on the right was from the conditioning chemo just last week. The green area is the normal range, and you can see that the induction chemotherapy a few months ago finally knocked things into remission for the last several weeks. The recent conditioning chemo is causing a downward trend similar to the one that happened right after the induction chemo, before the counts came back up again.

White blood cells


Platelets


Hematocrit (% of red blood cells in body)


ANC (bacteria-fighting ability)

So as you can see the main issue we'll be watching out for is infection, since my white blood cells are expected to stay around 0 for the next couple of weeks. They dropped like this when I had induction chemotherapy as well, and a whole rash of issues like liver problems, fungal infections in the lungs, and a slight case of pneumonia popped up because of it. So we'll be very careful for the next couple of weeks to make sure I stay really clean. We'll also be watching out for graft-versus-host disease, which comes up in 50% of transplant recipients in the first few months, and can range from a whole variety of things, like skin rashes and organ problems. I've already started taking medications to prevent it, but there's still a 50/50 chance I'll be dealing with some sort of GVHD issues so the doctors will be doing a lot of monitoring to catch things early.

One of my physician's assistants came by and brought a picture of a patient of hers who is celebrating his 25th transplant anniversary. He's living a healthy life and sends her a Christmas card every year. I got a little teary-eyed thinking about it, since it really puts the whole thing in perspective and how big of a deal I'll look back on this time 25 years from now. I hope it can just be something that I had to take care of and got it done, like getting a crown or a cavity filled. And maybe it will be. There are certainly other transplant patients who are running around in perfect health a year out from their transplant. Or maybe 25 years from now I'll remember this time as a celebration and will be looking at life as something to continuously savor.

Today a person from oral medicine came by to check out my mouth. This is one of the several clinical trials I signed up for to provide researchers with more data, but this particular one has a lot of benefit to me since it means I'll have constant monitoring over the mucositis situation. I remember the trial saying that they would come by every few days starting on Day 0, so today is the day. She inspected all corners of my mouth and noticed some thinness starting in the gums, as a result of the increased acidity in my mouth because of the extra mucous and saliva. She brought me a new toothpaste with thinner, softer bristles and added baking soda to my saline mouth rinse, which she says will help thin out the saliva. It feels good to be taken care of like this.

That's about it for now. Had a great lunch of Ivar's clam chowder and hard-boiled egg from the room service menu. So far salty food still tastes the best, so I've been sticking to things like pretzels, chicken noodle soups and egg sandwiches. The nurse just stopped by to add a new antibiotic to my pole o' bags, and other than the occasional blood draw or vital signs check, it's been a nice and quiet day.

Stem cells on the way

Just got word that my new stem cells are on the way! They're expecting them at SeaTac airport tonight around 8:30 pm, and they won't arrive at the hospital until about 1 am. I guess they have to go to the lab first for treatment. So it looks like another day similar to yesterday, then things should liven up around midnight.

Ready for transplant

That's me doing another couple of miles around the floor. The floor is shaped like the letter "A" and it takes 10.5 laps to complete a mile, including the little ends of the "A", so there's a little bit of back-tracking. There are emergency exits at each end, and Johanna and I are in the habit of kicking the door-jam before turning around. My sister thinks this is cute.

Today's day of rest went ok. It's not really a day of rest, it's more like a day to let the chemotherapy toxins finish draining from your body. Literally. I did a lot of peeing in these last 6 days. Just a few days ago I weighed 180 pounds and am now back down to 165. Most of it was from fluids, which they kept me heavily pumped up on during the chemotherapy. I think the infusion rate was 240ml/hr, which is about 1 1/2 gallons of fluid a day, not including the water I was drinking myself or from meals. I am also on a variety of other drugs, in both pill and IV form. One is a drug to ward off potential seizures that could occur from the Busulfan, one of the chemotherapy drugs. Another drug reduces the chance of GVHD (graft-vs-host disease), which I'll be on for a while even after I leave the hospital. Another drug helps protect your bladder, since the breakdown of one of the chemotherapy drugs can cause bleeding in there. There are drugs to protect your liver, and drugs to fight my not-quite-gone fungal infection. It's no fun being hooked up to the IV pump or taking a dozen pills a day, but it helps to know why they're there. One of the nurses left a fat reference manual called the "Drug Guide for Nurses". I haven't looked at it much, but it's nice to have since it can be hard to remember why you're taking that one particular drug with the funny name.

Today we put a new dressing on my Hickman catheter. The dressing is really just a square piece of sterile sticky tape that covers the entry point. They rip off the old tape (fun), sterilize the area, then put new tape down. It doesn't sting as much as the PICC line for some reason. Up until a few days ago the dressing included a round patch called a bio-patch, which covered the entry point and protected it from bacteria. Now they've switched to a different kind of patch that is supposedly better, and this one has clear goop instead of the bio-patch, so now you can see the entrance wound and suture in all its glory :) It's kind of cool, and makes a better impression when showing it off to people. I feel more like Iron Man now.

My dad hung out for a while and we talked on the phone with my aunt, uncle and cousin. My sister and Brian came over again and we watched more of Monk, then chatted with Joe who stopped by as well. Ryan and Joanna stopped by with their baby and I showed them all the decorations in my room. Johanna and I fiddled around with the video chat more since she's still at home with a cold, and my dad even got my mom up to speed on the video chat at their apartment. All in all it was a busy day!

I think I'm ready for tomorrow, but I'm not really sure what to be ready for. For example, I was expecting to feel awful by now, but I don't really feel that bad, relatively speaking. In fact, I ate the most food I've eaten in a day since I got here: a bowl of cereal for breakfast, cheeseburger and potatoes for lunch, chicken noodle soup, grilled cheese sandwich and pretzels for dinner. And right now I am absolutely craving crunchy tacos. At this point in my induction chemo, I was lucky to get down a few pieces of Cheerios since I was experiencing the full-on hell of mucositis and watching the insides of my mouth slough out.

I guess I'm a little worried that if I'm not feeling absolutely terrible, then the chemo drugs must not be working to their full effect, which might cause the donor's blood not to engraft as well. In fact, I've been watching my counts for the last 6 days, and they haven't really dropped very far at all. They're all still way above what my "normal" levels had been like for the last 6 months. But the doctors and nurses say not to worry, that they see this all the time, and that we're just seeing the lingering effects of blood cells that haven't died off yet. It'll take the new blood about 2-3 weeks to engraft and that I should expect the old blood counts to bottom out about 3-4 days after the transplant.

They also say to expect things to get worse, since mucositis usually doesn't surface until around day 3 after the transplant and I might not be able to eat food during it. I've been brushing my teeth and using the special mouthwash constantly, so hopefully it won't be as bad as last time. I was on IV nutrition for weeks last time, and while it was good to have as a backup plan, it was annoying sometimes and hard to get weaned off of, since you were never really hungry and you couldn't just quit it cold turkey, they had to cycle you off of it. IV nutrition can also be a source of infection since it's a breeding ground for bacteria, so if I can keep off it this time, that would be great. I'll also be taking just enough immuno-suppressive drugs to prevent my old blood from fighting off the new blood, but not enough to keep the new blood from beating out the old blood and leukemia cells.

It all seems like such a delicate balancing act. All I can really do is keep my body prepared and hope for the best really.

Cross your fingers!

2 days til transplant

Hi, it's Cindy again blogging from Steve's hospital room. Steve is feeling about the same today. He is keeping food down pretty well but still feeling queasy. And he walked two miles again today! 

My dad spent most of the day here hanging out with Steve. They spent much of the time reading their books :). Steve's reading a pretty good book called "Diary" by Chuck Palahniuk. 

Today was the last day of chemo for Steve (hurray!) and tomorrow is a day of rest before the transplant on Monday. Steve's counts went down a little today, but not much. This chemotherapy stops the production of blood cells, but it can take some time before the old cells die off. After the transplant, new healthy cells will be produced to replace the old cells.

Today Steve had fun setting up the iChat video so he could "visit" with Johanna since she is home sick still. It's pretty cute. Here's a picture of Johanna waving from home, as seen from Steve's laptop screen. You can see us in the top left corner looking goofy. We had fun playing with the different backgrounds. You can put yourself in Paris or in the clouds or under water with fish. Here's another picture of Johanna with a blacklight effect. 

Tonight we watched a few hours of the show called Monk. It's a show about an obsessive compulsive detective and it's pretty funny. We started with the first episode of Season 1. There are eight seasons so we have a ways to go :)

Brian and I checked out the cafeteria on the first floor. He had a pile of beef enchiladas which, I have to say, looked pretty unappealing. The cooks piled on a little extra because they were about to close and were going to throw it away, anyway. I played it safe with yogurt and chips. Luckily, Steve has had good luck with his room service food, which is pretty tasty. You have to be quick with the food around here, because last call is at 7:00 pm. 

Steve says hi and thanks for all your comments. Over and out.

3 days til transplant

Hi everyone, Steve's sister Cindy here. My husband Brian and I are here visiting Steve, mainly watching him lie in bed :) 

My dad spent a few hours visiting with Steve today. Unfortunately, Johanna developed some cold symptoms and was turned away at the hospital when she came to visit in the afternoon. My mom is also coming down with a cold, so she hasn't been by in a couple days. Major bummer. I hope they start to feel better soon so they can visit.

Here is a picture of Steve that Johanna took this morning. Lookin' good, Stever! Steve is feeling more nauseated today than yesterday and has been asking for consistent doses of Adovan, the anti-nausea drugs, which help a little. He says it feels better if he stays still, so he has not spent a lot of time out of bed. He did manage to get up today and walk two miles, which is more than I can say for myself, so that's pretty impressive! Woohoo! Nic and Rachael came by and walked with him for part of it. 

Steve's platelets and blood counts are going down a little each day since he was admitted on Monday, which is to be expected. But they are still far higher than they were a few months ago--thanks to the last round of chemo he had, which brought them all up into the normal range. Today his platelets are at 115 (down 27 since the day he was admitted), and his hematrocrit is 33 (down 9), and neutrophils actually went up a little to 3.91 (from 2.38). White blood cells are at 4.77 (from 4.84).

A couple days ago, we decorated Steve's room with tons of pictures that he can see from his bed. Here's a picture of the pictures! 

That's about it for the update. Steve says "hello." He has a chocolate milkshake to drink now.

Transplant day -4

Here's a picture of Steve today. I think the doctors are doing an excellent job of managing the fluid retention and reducing that puffy look. Every day Steve likes to tell me how he gained 10 lbs and then lost it again. Steve is still eating well and managing the nausea. When I left last night I was worried about his balance, but I was excited to see that his balance was good this morning. I talked to the nurse and she told us what we could do to still get exercise if he is not quite stable on his feet and they have a cool walking apparatus to help. So far we don't need it and Steve did his typical morning mile - after which he gets a well deserved nap.

I got to talk to his PA this morning who did one of his spinal taps and lumbar punctures at the SCCA. It's really nice to have familiar faces who know Steve over time. We got to talk a lot about keeping Steve moving and out of bed. She confirmed my suspicion that a day of downtime and sleeping all day can be a set back - making it that much harder to get moving again (succumbing to the "jail" effect as she says).

This is day 4 of his preparative treatment so every day feels like a big accomplishment - closer to transplant day! Steve says "Hello blog audience! thanks for sending me strong thoughts! Hopefully I'll be feeling better soon."

Day 3 post (transplant day -5)

Steve's been twittering so maybe he'll end up posting before I do - bear with us if so. Today Steve had a successful day - despite his feeling yucky he still walked 2 miles (morning and mid-day). He is battling nausea with some meds that leave him sleepy, so he's- sleeping. Truth be told he seemed a bit unsteady on his feet in the evening. His team of doctors rounded early this morning so I missed them but heard they were impressed with his ability to eat.

I'd like to get a schedule set up for visitors though visiting may really be more of a spectator sport of watching Steve sleep (and keeping me company). I'll try to post a picture tomorrow morning.

Day 2 update (Transplant day -6)

Here's an updated picture of Steve from after dinner tonight. Even though he had a rough night, I was still able to convince Steve to get out of bed today and he had a rather successful day. He ate normal portions for breakfast, lunch and dinner and we walked 1 mile after breakfast and 1 mile before dinner. 1 mile on his wing of the transplant floor is 10.5 laps so it's a lot of pushing his IV pole down a cluttered hallway but I'm excited he can be convinced to do it still. He's setting up the network hub as we speak, because they don't have wifi here. His parents also visited today. The TV in his room has a channel that they broadcast movies on (sans commercials). The selection of movies is decent (steve says a lot of chick flicks and box office thrillers) but in addition to the regular channels there is always something on.

Now, imagine that you are plugged into a wall 24hrs a day and there's a TV right by the bed and you aren't always feeling good - you can see it would be difficult to get up and do anything. So I'm pretty excited when he's willing to sit up or get up and do something.

Last night I decorated his room a little:

Today is his last day of Cytoxan (a myelo suppressive drug that heavily suppresses the bone marrow) and tomorrow he starts Busulfan (a myelo ablative drug that fully destroys bone marrow activity) which he will do for 4 days. Then he will have a "day of rest" where the drugs can clear from his system before he gets his infusion of donor cells. Steve says "I'm staying busy with the nurses and all of the blood checks and weight checks".- so there you have it!

guest post: hospital day 2 of prep chemo

hey everyone. Johanna here.
I left last night and Steve was in good spirits though a little puffy faced (this is from the steroids and fluid retention). This morning I arrived and he had tales of an awful night of nausea and vomiting. Sounds like he didn't get much sleep. I think after some rest and some food he may be up and about once again. We will be working with the docs today to get his symptoms under control so he can keep his appetite.

In hospital, first day of chemo

The first day of my hospital stay is off to a good start. We got here at 8 am and I was started on IV fluids pretty quickly, since at least 4 hours of hydration are required before they can start the chemotherapy. Compared with my stay at Swedish hospital, I'm starting to like UW Medical Center better. For one, they have much newer IV equipment. The pumps are quieter, the IV poll itself has a handle for pulling it around and isn't squeaky like my other polls have been, and the interface is pretty fancy and even shows the name of the current drug or chemotherapy being infused. The TV in the room has full cable and even a movie channel and includes a separate remote, which is one of those things you take for granted until you try and use one of those dysfunctional hospital remotes affixed to the bed. The last remote I used like that had just one button for the TV - you could only increase the channel. To turn the TV off you had to go through *all* the channels to the end. So something as simple as a real TV remote is pretty nice.

I also get to wear my own clothes here! This rocks, since the hospital gowns aren't that comfortable and it's hard not to feel like a sick person when you're wearing them. So I've got comfortable sweat pants, t-shirts and hoodies, and feeling much more like a normal person. The other cool thing is that the nurses have a chart of my blood counts posted on my bulletin board, which they update every morning. This is great, since normally I have to bug the nurses to get a copy of my labs, and then I put them in my own spreadsheet. With my own clothes and these kinds of attention to detail, I feel a lot more taken care of and less like a sick person.

So far the only downside is that the internet connection is wired only. No wireless! It's much faster than Swedish, but I may have to smuggle in a small wireless router or hub so that Johanna and her mom and anyone else can share the internet connection.

We started chemotherapy an hour ago and the first session just finished. The regimen is Cytoxin first, which suppresses the immune system, then Busulfan, which suppresses the marrow and everything else. I'm on a clinical study where they've reversed the order of these chemotherapy drugs. Normally they do Busulfan first, then Cytoxin, or "Byoo-sigh" as they call it, but it's been shown that doing Cytoxin first is less toxic overall so they're experimenting with that. Apparently they've been wanting to do it in this order for years, but until recently the Busulfan had to be taken orally, so they had to do that one first, otherwise patients would have problems keeping the pills down. Since it's a clinical trial, the researcher has been in on a regular basis to draw blood to check the levels of Cytoxin in my system for their research.

Other than having to pee all day, the only side effect I've experienced so far is right after the Cytoxin chemotherapy drug started. The feeling was like being drunk, oddly enough. I'm still a bit groggy, and things going on in the room feel sort of far away. The drug also irritates your sinus passages, so I experienced a side-effect like sniffing some toxic fumes, which is pretty much what's happening :) The Cytoxin infusion was only for an hour, so I'll just be on hydration fluids and various medications until tomorrow. For example, they're giving me a drug called Mesna to help the bladder, since the chemotherapy can cause bleeding inside your bladder. Fun stuff :)


My daily blood count chart


Not a bad view, it's nice to see the trees.


My fancy IV pole.

Last day at home, tomorrow in the hospital

Today is my last day as a free man for a while. Tomorrow I get admitted into the UW hospital to start the chemotherapy regimen that will wipe out my bone marrow. Next Monday is the actual transplant, which consists of just a simple infusion of the donor's stem cells. They're smart enough to make their way inside the bones and start producing new blood. No surgery or anything. On the left you can see the Hickman catheter that was put in on Friday. The white disc is called a biopatch, and contains antibiotics that keep the entry wound free of infection. You can't see it, but there is a small incision up by my neck where the tube actually enters the vein. Between the biopatch and the neck vein, the tube tunnels under the skin. This is partly for convenience so that the Hickman doesn't stick out of your neck, but I also found out from a nurse that the tunnel acts as a natural barrier for infection, since the distance between the vein and the entry site are so far apart. The ends have tape wrapped around them which the necklace clips onto to keep the whole assembly from dangling around. So far it hasn't been too uncomfortable and most of the time I forget I have it. Pretty amazing stuff.

Today I met up with a friend for tea at Remedy Teas on Capitol Hill, got another round of antibiotics at the SCCA, went for sushi and noodles at Blowfish, then met up with a friend for coffee at Cafe Vita. Afterwards, I walked downtown, caught the bus home, then met up with Johanna and had dinner with my parents to help send me off to the hospital. Admittance time is 8 am tomorrow morning, so Johanna and I are just finishing up some light packing before we head off to bed.

I've enjoyed seeing all my friends and catching up recently, and look forward to seeing everyone when I get back out again. I should be able to have visitors almost any time during the next 4 weeks, but to make things easier I think Johanna and I will put together a simple sign-up sheet for visitors so that no one has to worry about when might or might not be a good time to come by. You may be given a gown and mask to wear, but as long as you don't have a cold or scratchy throat, it should be ok. Though I may not look very healthy to look at some of the time :)

My friend, Josh, joked that my marrow transplant should be called a "camaro transplant", and my mom remembered that and decorated this miniature Camaro with a bunch of cool decals! For example, the license plate says "platelet" and there are decals like NMDP for National Marrow Donor Program, and HGB for Hemoglobin. The car is yellow since I'm on the yellow team. See if you can figure out all the decals :)

9 days until transplant

Today we switched to an IV version of anti-fungal antibiotic, since the voriconazole can cause problems during the upcoming chemotherapy. The infusion took place at the SCCA, and they also taught us how to change the dressing on the Hickman and prepare the dressing for taking a shower. With the PICC, I needed to wrap the arm in saran wrap and carefully tape the ends to make the whole thing waterproof, which was hard to do by yourself. It was also painful since your arm moves around a lot and the tape pulls at your arm hair. The Hickman dressing is waterproof by itself, so all that needs to be done is to cover the ends of the Hickman tubes with a special wax paper called parafilm. A few seconds preparation time and that was it. The nurse set I could even go in the hot tub with it, as long as it's not submerged. Not bad!

After the infusion I met my boss for coffee, then met up with some coworkers later that evening for some Rock Band. Tomorrow is another hour-long infusion and marks the last day of freedom before I go into the hospital. Can't wait to get things rolling.

Hickman surgery successful, still sedated and recovering

I probably won't remember parts of what happened this afternoon, so I'll try to write as much as I can before the amnesiac effects of the sedation wipe it all away :)

The surgery went well. Last night and this morning I showered using a special antiseptic soap on my chest that they require patients to use before surgery. They'll actually postpone the surgery if you don't do this. The way the Hutch works, the pre-soap ritual was probably the result of someone's research that found that patients using a surgical soap in advance of this surgery decreased their risk of infection by some percentage. Anyway, I did the soap, wore freshly laundered clothes to the surgery room (also required), and it was on.

The procedure involves 2 incisions, one at the jugular vein in your neck, and the other in your chest above your nipple. Rather than having an unsightly catheter sticking out of your neck, they tunnel the tube under your skin between the 2 incision points. This way, the catheter enters the vein at your neck, but comes out of your body lower down on your chest. With your fingers, you can actually feel the catheter under the skin. This layout makes it much more convenient since the ends of the tube can rest in the natural chest cavity pocket there. I have a necklace with a clip on the end to keep it from dangling around too much.


The illustration shows a single-lumen Hickman. Mine is a double-lumen Hickman, which means it has 2 tubes coming out, and the tube itself is split into separate chambers all the way to the heart. This allows them to do things like an infusion on one line, while drawing blood from the other. With a single lumen they would need to interrupt the infusion.

Apparently Dr. Hickman, who invented the device, retired just a few months ago at the ripe old age of 83 and was the sole person doing these surgeries until the day he retired. I'm not sure if that's a good thing, or a bad thing :) The doctor who performed mine studied under Dr. Hickman for years, and was great. The surgery went perfectly.

The procedure itself wasn't too bad, though I'd read up on it so I knew pretty much what to expect. The doctor and nurse also did a great job of explaining, and did a show-and-tell on the ultrasound so that Johanna and I could see the actual jugular and where exactly in the jugular he would insert the catheter. It pulsed with my heartbeat, and you could see it squish and move around as he pushed down with the ultrasound tool.

Really, the most uncomfortable part of the whole procedure was the lidocaine injection into the neck for the incision, since it burned a bit, and when they used the tunneling tool to open a passage under the skin for the catheter. Everything else was relatively easy. The amazing part was that once they got everything sterilized and set up, the procedure itself took only 10 minutes. But it took a 45 minutes to properly prepare and sterilize the room. What I mean is, I was covered from head to toe with a sterile tarp and a piece of metal near my head to suspend it from my face. A window was cut out of the side so that I could breathe and talk to the nurse that was applying the IV sedatives and pain-killers. Around the surgery site, the tarp was taped down and the site of the surgery was sterilized with antiseptic soap. The doctors, technicians, and nurses were fully gowned and had face masks and hair nets. It was nice to see the amount of care taken to keep the place sterile, since infection is the leading source of problems with these central lines

A combination of ultrasound and x-rays were used to position the guide wire into the proper position in the superior vena cava above the heart, and to make the appropriately-sized hole in the jugular vein for the catheter. I was on a flat table beneath a large x-ray machine, and the table was tilted back with my feet above my head. So the experience was like being in a narrow tent, lying backwards downhill. I'm glad I wasn't claustrophobic! But like all my previous procedures, once the sedative started flowing, everything felt great :) I was relaxed and calm and just enjoying the fact that the procedure was happening and would soon be over.

Recovery was fairly quick, and after some string cheese, Oreo cookies, and apple juice (I wasn't allowed to eat all morning and was starved), we were done! We headed to Taco Time to satisfy my taco craving, and then stopped by my old office to see coworkers I won't see for a while. It's been a few hours since the surgery, and I'm hardly noticing the Hickman at all, except for some soreness in my neck, which is expected since there are a lot of small muscles up there which they had to cut through. I think it may prove to be less of a hassle than the PICC line.

Tomorrow we take a class on caring for the Hickman, such as changing the dressing and how to protect it when taking showers, and I'll have an hour-long IV infusion after that and again on Sunday. Then Monday I'm admitted into UW Hospital. It's sort of a relief to have this week over with, since there were a lot of unknowns, like what the results of the CT scan and data review would be, and how I would feel after getting the Hickman line. It all feels pretty good, so I'm excited about moving on to the next stage.

Ciao for now! Thanks for all the comments :) I love reading them all, they really make my day!

10 mile walk

By the way, here's a route of the 10 mile walk I did yesterday. It was a nice walk, not too much traffic except around the Montlake bridge and the 520 overpass. I hit the Burke-Gilman trail for part of the way back after leaving the University.  The zig-zag walk through Capitol Hill was great. It's one of my favorite areas and offers lots of inspiring view of the Space Needle and Puget Sound, especially refreshing after the hill-climb from Montlake.

On the way, I listened to a great episode of This American Life about inmates at a high-security prison as they rehearsed and staged a production of Hamlet. It was fascinating listening to murderers acting out a play about murder, and one critic said it was the best version of Hamlet he'd ever seen. Here's a link to the episode.


I parked the scooter in the neighborhood at the top right and walked clockwise. At the bottom left is where I hung out at Starbucks for a bit to fuel up and play on the internet.

"Go" for transplant!

We got the good news today that the CT scan showed "reduced inflammation in line with recovery from infection", which was good enough for Dr. Doney, the attending physician in charge of my transplant. She gave me the good housekeeping seal of approval and after the necessary consent forms were signed, gave the green light for the transplant! The whole meeting was relatively uneventful, though she did a mock drum roll when announcing the pulmonologist's report. :) The donor is also ready to go, and passed her physical exam with flying colors. She'll start taking drugs on the 22nd to release her stem cells into her peripheral blood, and then on the 26th will go in to have her stem cells drawn. I'll be ready on the receiving end and they'll fly the stem cells over and infuse me as soon as they get here. It's getting exciting!

So tomorrow I'll have surgery to get the hickman line installed, Monday I'll be admitted to UW Hosptal to start 6 days of chemotherapy, and the Monday after will be the transplant.

We are at dinner with my sister, Brian and my family to celebrate the "go" decision, even though it's kind of weird to be celebrating something like undergoing a transplant. But we're celebrating the chance at a new life, so that's pretty cool :)

12 days until transplant

Tonight I am blogging from the huge Starbucks on Capitol Hill. I walked here from Ravenna, an exact 5.0 mile walk, according to Google Maps. I've been wanting to do a full 10 miles before I go into the hospital and there aren't many days left to go, so today was the day. I rode my scooter and parked it on a quiet street near Ravenna, and am looking forward to riding it when I get back to it. Hopefully I can still find it :)

Yesterday Johanna and I finished the Health Safety class and the IV Pump class at the SCCA, which were pretty informative. Actually we ducked out of the Health Safety class a quarter way through since they were running out of chairs. We had already taken the 2nd half of it earlier, but I had been under sedation earlier that day from a bone marrow biopsy and spinal tap and pretty much forgot everything that happened that afternoon, so we decided to take it again. I even went to the dentist and had fillings filled that day, and it's the first time that I can't point out which teeth were worked on, since the sedation causes a bit of amnesia. Johanna and I were the only participants in the IV pump class, and we each had pumps and a pretend Hickman line to practice on. The nurse showed us how to load the backpack with the IV bag and pump so that you could carry it around, and how to program the pump. We felt like old pros, since we had figured out a similar IV pump when I was on IV nutrition after being in the hospital for my induction chemo. We won't pick up the pump and backpack until after I go home from the transplant, and then every other day we'll visit the clinic for supplies such as saline syringes, sterile wipes, and my medications.

Today I went in for a blood draw and the much-anticipated CT scan, which will determine whether we go forward with the transplant or not. I can't imagine there would still be inflammation in the lungs after all this time and since I feel so great, but that's what I thought last time and there it was, so it's hard to know. We'll know the results of the scan tomorrow.

Well, it's time for the 5-mile walk back to my scooter. I'll report tomorrow on the result of the CT scan and the data review meeting where we'll make the go/no-go decision. Wish me luck!

13 days until transplant

I'm hanging out at Grand Central Bakery near the SCCA, nursing a cup of cafe vita coffee and eating a huge croissant. Not much to report. Yesterday I had a scheduled visit with my transplant team and met Dr. Doney, the attending physician that now heads my team. Each month they rotate attending physicians and other staff between the 12 different teams, so Dr. Doney will be in charge of my transplant. She's been at Fred Hutchinson for 30+ years, and she was well-informed about my case and funny too. We'll meet again on Thursday for a go/no-go meeting, and if all goes well with the upcoming CT scan tomorrow, I'll go in for surgery on Friday to have my Hickman central catheter put in. The Hickman is sort of like the PICC line that I had in my arm, except that this one is inserted into your chest directly above your heart, so there's less chance of the line moving around or the line getting blocked. It's good timing too, since I'll need to switch from the voriconizole antibiotic to an IV antibiotic 48 hours before the chemotherapy starts, so it'll be nice to have the Hickman line in since it's an hour-long infusion each day.

In transplant speak, I'm at day -13 now. Day 0 is the day of the transplant, and everything is measured in terms of days before or after that. There are checkups at day 50 and day 100 for example. And they've done so many transplants that they know when to expect side-effects like mucositis (day 3 - day 13) and hair re-growth (day 15) to occur. The chemotherapy to wipe out my existing stem cells is called conditioning, and starts on Day -7. Right now I'm in the preparation stage.

Friday will mark the end of my freedom for several months, since from then on I'll have the Hickman catheter and we'll have to change the dressing regularly until it's removed. I'll be tethered to it 24 hours a day for a month starting next Monday and could have the Hickman for a while after that. So Friday is sort of a psychological milestone. But I'm looking forward to it. I'm ready to get this transplant done. My last hospital stay is far enough behind me that it's starting to be a distant memory, rather than something that feels like it just happened yesterday.

In other news, I'm sad to say that Dawn, the fellow blogger I mentioned in my last post last week, passed away last Thursday. My heart goes out to her husband and family.

That's it for now. I'll report back with more soon. Last Friday we started off the weekend great with a stay at the Salish Lodge in Snoqualmie, courtesy of our friends Jenny and Greg. We were there while the falls had a tremendous amount of water going over them as a result of all the recent flooding, so it was something you don't normally see.

2.5 weeks to go

I'm sitting in a Starbucks on Queen Anne nursing a double short latte. It's raining buckets outside, and my rain jacket is soaked. I just walked up from Fremont while listening to the latest This American Life podcast. The wifi is free and I'm buying coffee with the Starbucks cards I got for Christmas, so it's a good deal. I don't have much to report, except that things are still on track, and I'm keeping busy with appointments at the SCCA and spending time with my family. Besides attending classes, my only job right now is to stay healthy and stay hydrated. My nurse wants me to drink 3 liters of water a day, which isn't really so hard since I end up drinking a lot while taking all the necessary drugs 4 times a day.

Johanna and I were a little down last night and this morning, since a fellow blogger who underwent a transplant has taken a turn for the worse in the last few days. She had a cord-blood transplant over a month ago, and has been in ICU for the last 4 weeks with small bits of good news, but generally steadily getting worse. It started with a kidney complication, which led to fluid accumulating in her lungs which they had to drain each day. Her lungs became damaged and she went on a ventilator soon after. Possibly because of all the medication and antibiotics, her heart started beating irregularly, and they had to restart it once. Her husband has been steadfastly blogging the whole time. And all the time I'm hoping for the best and have been assuming that, though things are bad, they will turn around eventually and they will all look back on it as just some really tough times. It's like watching a dramatic movie and thinking to yourself that surely the director won't end it with a tragedy. You just never really think that the worst could actually happen. So it has been sad to read the last few blog entries and realizing that it's possible she won't pull through. She's 19 (sorry, she's 28), and though her leukemia was worse than mine and she didn't go into her transplant in remission, reading about her struggle has really had an effect on us. And from her pictures you can see that she is a vivacious, young 28 year old with tons of energy and is smiling in basically every picture. Yesterday they got news that her leukemia had returned with a vengeance, and they don't plan to restart her heart if it stops again. She's been under chemical paralysis and heavy sedation, so they might not even get to say goodbye to her. It's all very sad and so I think it has made Johanna and I a little down the last few days. So cross your fingers and toes and pray that she does ok. Her name is Dawn and her blog is at http://www.goshdawnit.com/.


Captain Dawn

Yesterday I met with the transplant team and it was an uneventful meeting, which is great. Everything is still on schedule and we're just waiting to see what next Wednesday's CT scan shows. I'm getting anxious now and am ready to get this thing done with so that I can get back to work and a normal life. Assuming the CT scan looks good, the transplant schedule shouldn't change from the following:

1/12 Mon - Clinic visit with transplant team
1/13 Tue - Food safety class
1/13 Tue - Managing care at home class
1/13 Tue - IV pump class
1/14 Wed - Blood work
1/14 Wed - CT scan
1/15 Thu - Patient/caregiver support group
1/15 Thu - Data review (go/no go meeting)
1/16 Fri - Surgery for Hickman central catheter
1/17 Sat - Hickman care / teaching session
1/19 Mon - Admitted into UW Hospital
1/20 Tue - Start 5 days of intensive chemo
1/26 Mon - Transplant

That's about it for now. Check out these awesome turkey burgers our friends Nic and Rachael made for us the other night! That's Nic, with their cute but hyperactive pug, Lola. :)

Happy new year!

Hello from 2009! Our trip to Los Angeles was great. We basically spent the whole time in the beach cities, relaxing or shopping or eating, either in Manhattan Beach where Johanna's sister, Val, lives or in Hermosa Beach where our hotel was. Walking between the cities was simple - just a quick stroll up or down The Strand, a pedestrian and bike trail connecting most of the major beaches in LA. Both Val's house and our hotel were on the Strand, so we probably put in at least 10 miles of walking, and the scenery along the way was gorgeous. On one side was the blue ocean with people surfing or playing volleyball on the beach (even in December!). On the other were a wide variety of closely-packed and expensive beach houses. You'd see a spanish colonial next to a Victorian next to a small cottage next to an ultra-modern glass and steel behemoth. And almost all meticulously cared for by their owners. There was a lot to see. The beach community definitely has a sense of self-pride and belonging, and it wouldn't be hard to get accustomed to their lifestyle. Alas, after 5 days we headed back home to our cold, wet Seattle :)

It seems like half the people we met had colds while we were there, with phlegm all colors of the rainbow, but we did our best to avoid too much close contact and I seem to have managed to avoid it all. Though I did get a sunburn on my face and my doctors gave me a slap on the wrist about it the next day. After the transplant, I'll have to be more careful, since graft-versus-host disease (GVHD) can flare up as the result of a single sunburn, and could take months to get back under control.

The day after we got back, I was scheduled for a blood draw, a nutrition class, an EKG, and a checkpoint visit with the transplant team. Everything went well, I passed all my tests from the previous week with flying colors, and all my blood counts were normal. Super cool. They are also checking the Voriconazole (anti-fungal antibiotic) levels in my blood to see if the dose needs to be adjusted. The next day I went back in for another blood draw, as my donor's sample blood had just arrived at the lab. They've already determined that we match as closely as possible through our HLA typing, but continuous blood checks are needed to make sure that my blood doesn't develop antibodies against my donor's blood. New antibodies can be inherited by getting a transfusion, or sometimes they can occur out of the blue.

Nothing much is expected between now and next week. Next week I'll have another checkpoint visit with the transplant team and that's it. The week after, we'll do another CT scan to see if the lung infection has cleared up, and if so, we'll proceed with the transplant.

As of now, the schedule looks like this:

Jan 14 - CT scan to check lung infection
Jan 15 - Transplant team makes go/no-go decision on transplant
Jan 16 - Hickman line (like PICC line, but goes in your chest)
Jan 19 - 5 days of intensive chemotherapy to wipe out marrow
Jan 26 - Transplant

It's turning out to be a nice day so I think I'll head off to a coffee shop somewhere. Ciao! Here are some pictures from our trip: