Day +57 - PUVA, UTI going away, cold symptoms

Johanna and I celebrate a long week with a banana split hot fudge sundae!

Well, the steroids must be kicking in because it's 2 in the morning and I've got a bunch of newfound energy. I just finished folding the laundry, emptying the trash, downloading 3 new CDs from Amazon.com, and cleaning the house. I'm on a chronic GVHD taper schedule at the moment, which means that I alternate between 15mg and 60mg of Prednisone each day and the steve-totally-wired effect seems to be delayed by about a day. Yesterday was the 15mg dose, and today I was worthless all morning and afternoon. I started by taking Johanna to work, dropping by the SCCA clinic for my regular dose of tanning bed treatment to help with the GVHD, then I headed back home, watched a movie, and fell asleep on the couch for a couple of hours. After I woke up, I thought I should probably get more sleep to help fight off this newfound cold I caught, and went upstairs for another few hours of sleep. By then it was around 4pm, so I dropped in to watch my dad put in sheetrock at my sister and brother-in-law's basement, then I headed back home where I lounged around again, totally unmotivated to do anything until Johanna came home. It wasn't until after dinner that the 60mg dose of steroids from this morning finally kicked in, and here I am, totally wired and ready to re-organize the garage, the house, you name it. Tomorrow I expect it to taper off again, and by the next day I'll probably be totally worthless again. It's a weird life I lead.

These last 2 weeks have been the roughest so far. My uncle commented the other day, "suck it up!", and that made me laugh out loud. I remember thinking back to when I read Into Thin Air, the book about the climbing disaster on Mount Everest. The thing I thought was most interesting was that most of the folks that tackle Mount Everest aren't great climbers. In fact, many had never climbed before at all and go to Mount Everest with brand-new gear they may have never even tried on. But they all have one thing in common, which is a total determination and drive to make it to the top of the mountain no matter what. Their stories include them going up with broken ankles, broken toes, splitting headaches, lack of food and water, and all kinds of colds and coughs and respiratory diseases, but it doesn't stop them from pushing to the top. So I was thinking, I bet these guys would just laugh off a urinary tract infection like it was a chapped lip. Anyway, I'm not sure I'll ever have that kind of determination and drive, but I am happy to report that the UTI has cleared up for the most part, which deserves a huge halle-freakin-lujah, and has put me in a much better mood the last few days. Guys, it's reported that women will suffer from UTI *50* times more often than men during their lifetime, so say something extra nice the next time they come down with it.

I've totally fallen off the bandwagon as far as my daily walks go, and it's affected my mood in a big way. Now that all these annoyances are finally clearing up, I'm looking forward to getting back into the swing of things. I'm way behind on my Planet Money and This American Life podcasts as well.

Here's what's has been going on.

Last weekend I came down with a nasty cold. Johanna picked it up from work, so it was pretty much impossible for me not to avoid it. The surprising thing is that I didn't come down with a fever, so other than dealing with a runny nose and a cough, it hasn't been unlike getting a cold when I've been healthy. I was worried that if I ever came down with a cold during this time, that it would be an immediate trip to the hospital along with shaking chills and awful fevers. So either the antibiotics or the new stem cells are doing their job. Yesterday was probably the worst day as far as cold symptoms go, so the cold may already be clearing up. The only annoying part about this whole cold thing is that when I go to the SCCA I'm technically in "Respiratory Isolation", so I have to wear a mask everywhere I go and all the nurses and doctors have to gown up around me. I also have to sit in specially designated areas in the waiting room, and people generally treat me like a pariah even though they don't realize it. It's understandable I suppose, since I was pretty paranoid too when I left the hospital, but it's hard to feel normal when all the formalities make you feel like such a sick person. I even got in trouble last Monday for entering a crowded elevator, since folks in respiratory isolation are encouraged to take empty elevators. Argh! The clinical trial that I'm on, the one where I visit the "snot guy" every week, detected that I had the virus last Friday before I even started having symptoms. So they immediately reported it to the clinic which called me to tell me about it right after, so it's impossible to try and hide it even if I wanted to :) I have to admit it is pretty neat to be under such a level of care that you're notified when you have a cold virus before you even know it.

My skin biopsy for skin GVHD came back positive last week, which wasn't unexpected. We assumed it was GVHD, but the main point of the biopsy was to rule out a rash due to the Voriconozole anti-fungal medication I'm taking. Between 50% and 90% of transplant patients get GVHD of some kind, so it's not really a cause for concern. I feel lucky since my GVHD seems to be only affecting my skin. Other organs that can be affected include the liver, the gut, the bladder, and the eyes. Gut and liver symptoms may come later for people that get acute GVHD, the kind that occurs within the first 3 months after transplant, so I'm keeping my fingers crossed. It can take up to 5 years to be fully rid of GVHD, but like I've said before, everyone who has it says they would much rather be dealing with GVHD and alive than the alternative. The best treatment for GVHD is prevention, which is why I'm on a cocktail of immunosuppressive drugs including the Prednisone steroid, Tacrolimus drug, the Methotrexate chemotherapy I received after the transplant, and other drugs like Ciclosporine. I'm also using a topical corticosteroid that I rub into my hands twice a day.

To help with the overall skin GVHD, we started something called PUVA therapy last Monday, which stands for Psoralen and UV-A light. Basically it's tanning bed therapy, which seems strange since they keep stressing that I need to use plenty of sunblock when I go outdoors, since even a small sunburn can cause GVHD to flare up which would require a bunch of steroids to get it back under control. So when they said they're going to treat me by having me take drugs which would make me extremely photo-sensitive then subject me to direct UV radiation, I was a little worried. But the UV radiation only lasts 30-60 seconds. It's just long enough to feel nice and cozy under the warm lights, then it's all over. I've had 2 sessions so far, and it takes longer to get undressed and dressed than the therapy itself. Each morning I take these funny-smelling green pills called Psoralen, the drug that causes photo-sensitivity, then I head down to the SCCA's tanning bed therapy room where I put on these tiny green swim goggles with UV protection and a special UV lip balm, then strip down and get in the tanning bed. It takes less than a minute and I'm done for the day. Unfortunately, the Psoralen drug stays in your system for 24 hours, so I have to be even more careful than normal about being in the sun for the rest of the day. They've been doing PUVA therapy for 20 years, and the results are pretty good. In some cases the skin GVHD has cleared up entirely after 5-15 sessions, so it's seems pretty worthwhile compared with the alternative types of treatment like steroids and other drugs. There is a small risk of skin cancer later, but again, the risks of steroids and the other drugs are relatively worse.

Not a lot else has changed in my schedule. We're trying to wean me off the IV magnesium and stopped it last week, so now I'm taking 8 tablets of the oral magnesium each day. Like milk of magnesium, this can affect your bowel movements in a not-so-good way (i.e. diarrhea), but luckily I've been able to tolerate the higher doses. Unfortunately, my most recent counts showed my magnesium levels starting to get dangerously low, so we had to order a one-time bag of IV magnesium yesterday to get it back up. Hopefully things will stabilize a little bit, but this is an example of how closely I'm being monitored. As another example, they noticed my phosphorous levels were low and recommended a change in diet for the next week. It definitely takes some effort to make sure I'm staying on top of this stuff. Even forgetting one dose or forgetting to flush my Hickman line can be a problem.

I was also a little depressed last week when I heard that a fellow blogger of mine, Michelle, relapsed at day 110 or so, after having perfectly good counts and an excellent prognosis during the entire 110 days after her transplant. She had already gone back to San Francisco to get back to a normal life, and is now having to deal with whether to come back to Seattle to re-do another transplant or start on more chemotherapy and treatment. My heart goes out to her. It reminds me that we can't take any of this for granted.

Anyway, maybe I'll have some pictures of me with a tan for the next post :)



Yum, home-made Pad Thai.




Blurry picture of Dad and Brian working on their basement.




Brian measures the insulation for the new walls.


Over and out.

Day +51 - Feeling miserable (I complain day)

There's no other way to put it, but this last week and a half has been miserable, mainly because of the urinary tract infection that I'm still suffering from. It's affecting my sleep schedule in a big way since I can't get more than an hour of sleep without waking up with a huge urgency to pee, so all day long I'm exhausted and tired, like I've pulled an all-nighter for a week. Each visit to the restroom is painful as well. Essentially the inner lining of my bladder is sloughing off and pieces of the tissue, some liquid blood and some congealed blood all pass through the urethra and out of the body each time. This is very painful. And it happens every time I hit the restroom, which is basically all day and all night long.

I get worried now about running errands or picking Johanna up from work that I might not make it. It's an awful feeling and generally just causes me to stay indoors even more. When standing or walking there is a general ache down there all the time, not unlike the after-ache of being gently kicked in the testicles. I've found that sitting and lying down are the only way to make it feel better. So that's caused a lot of problems in my daily routine since I'm not walking as much, which makes me feel even worse. It's an awful cycle. Drinking massive amounts of water helps the pain by diluting the amount of blood in the urine, but this just causes even more trips to the restroom :(

The tests last Tuesday showed that it's not a bacterial infection, which is good, since it means it's not something that can spread into the kidneys and cause more problems, but it's not as good since bacterial infections can be treated with antibiotics relatively quickly. A bacterial infection is the kind of urinary tract infection most people get, especially women. In my case, I'm suffering from a reactivated BK virus which is a virus present in more than 80% of the population. Normally it exists in a dormant state, but in patients who are immunosuppressed this virus can reactivate and cause an infection. The downside is that the treatment for BK virus can cause havoc on one's bone marrow, so the doctors prefer not to treat it. Tests were run for the BK virus in my urine and in my bloodstream, and they found incredibly high levels in my urine but not in the peripheral blood, which is good. If they had found high levels in the blood they would have consulted with the infectious diseases team and considered giving me the treatment anyway. But they didn't find high levels in the blood, so I'll just have to suffer through it. For most patients, it goes away after a few weeks to a month, sometimes longer. Here's hoping it goes away sooner than that.

The doctors have been watching my skin for GVHD now that I'm tapering off the Prednisone steroid, and we've started noticing just a little bit on my arms, thighs, and hands again. When I was in the hospital, I got graft-versus-host disease (GVHD) very quickly after the transplant. They called it hyper-acute GVHD, and loaded me up with a super high dose of steroids (180mg/day). The GVHD went away a day or two later, and the purpose of the taper schedule is to slowly reduce the steroids until the GVHD just starts to return, but not give it a chance to flare up again. If it flares, we'd have to restart with another high dose again to get it under control. So it's a delicate balancing act. Right now I'm on a very coordinated dose of 60mg one day, then 15mg the next day, then 60mg, then 15mg, then 55mg, then 10mg, etc. This taper dose is more slowed down than even before, and there is no end date anymore. Before it was going to end in March, then April, and now it's indefinite, so that's a little bit of a bummer.

One of the doctors suggested that the skin rash may be due to the anti-fungal antibiotic I've been taking for months, the visual disturbance-inducing Voriconozole, so the doctors brainstormed and ordered a skin biopsy on my thigh to rule out one or the other. During the biopsy, they use a razor-sharp hollow tube to basically take a little core sample of your skin. The biopsy went great, but the sterile tape used to cover the wound made a mess of the delicate skin on my thigh. All of the skin on my body is really thin right now, and when I went to peel off the tape from the biopsy spot 24 hours later, several pieces of skin came off with it along with a lot of hair. Argh!! If it's not one thing, it's something else. I could barely walk around the day I took it off.

Here's a picture of my inner thigh below. See that nice little hole in the middle? That's where the skin was biopsied. No pain there at all. See all those little bacony strips? That's missing skin. Those hurt like crazy.

Ow.

I've had to be creative with gauze and stretchy hose to cover the whole thing. Johanna even suggested using a maxi-pad which worked well too. I'm still annoyed that the tape caused more problems than the stupid biopsy itself.

On a good note, I'm off the IV magnesium! I've been loading up on more and more of the oral magnesium pills, and so far my gut and stomach have tolerated it just fine. They'll be looking at my magnesium levels closely after the blood draw tomorrow, so being off the IV magnesium may be short-lived. But at least we're making progress. The groin rash and armpit rash are finally resolving too. I've also started a taper schedule on the Tacrolimus drug, another drug that prevents GVHD. Instead of 1.5mg twice a day, I'm down to 1 in the morning and 1.5 in the evening. The Tacrolimus drug depletes magnesium which is why I need supplemental magnesium to keep me going, so reducing the Tacrolimus dose should help things as well. I really like it when progress is made to reduce the amount of drugs going in me.

In other good news, I'm at Day 51, halfway to Day 100 when folks are normally discharged! I still can't believe how fast time is flying by.

Tomorrow I have a blood draw, a visit to the snot guy, then a clinic visit and that's it. I'm hoping I can get back on the bandwagon again and get a good walk in tomorrow. Each day I don't walk it makes a huge impact on the way I feel, from being motivated, to having energy, and just my general well-being. It's amazing how much of an impact it makes.

Firefighter Stairclimb

Every year, firefighters from around the world compete in the Firefighter Stairclimb up Columbia Center in full fire gear, masks, and oxygen tanks to help raise money for the Leukemia & Lymphoma Society. It's a whopping 69 flights of stairs up one of the tallest buildings on the west coast. This year, 1500 firefighters competed in the competition and one of them, Dan Nelson, ran the competition in my honor! Dan is Johanna's chiropractor, and he's also a firefighter who competes in the stairclimb every year. I've met him a couple of times and he's a great guy. There is even an article about his climb in the latest issue of Seattle Metropolitan magazine.

Here's a quote from the Seattle Met article:

Nelson, who didn’t become a firefighter until he was 44, trained for the department’s qualifying endurance test by hauling 100-pound sandbags up Laurelhurst’s cruelest hills. Right up until the day he tries to conquer the Columbia Tower, he’ll be scaling stairs at Husky Stadium—with an air mask and 60 pounds of gear instead of sandbags.

Unbelievable! He's just over halfway to reaching his funding goal. You can help him out by making a donation at his web site.

Day +42 - UTI and hand cramps

Here's a picture of me blowing out candles on my *other* birthday. Yeah, the one where you celebrate getting older instead of celebrating new life :) Maybe my new birthday will cancel out my regular birthday and I'll just stay this age! For my birthday my mom made strawberry shortcake and Cindy and Brian brought over a home-made ice-cream creation called Steve's Lucky Birthday Ice Cream, which they had painstakingly made by digging out marshmallows from Lucky Charms and adding them to the ice cream. I ate Lucky Charms as a kid by eating all the cereal first and saving the marshmallows for last, so that was pretty cool.

Late Sunday night I started developing what seems like a urinary tract infection. I called the nurse Monday morning and he sent me in for a urine sample. I have a clinic visit today and we'll see what the results are. I'm hoping we can get it cleared up in a few days. As you can imagine, the motivation to try and drink 3-4 liters of water a day goes down significantly when you know you're going to have to painfully pee it back out again. Infections of any kind are expected, and since this would be the first infection after the transplant I'm still doing pretty good.

The other weird issue that started last night is that I'm experiencing sudden cramping in my hands and fingers. And I mean really painful cramping, where my hands and fingers would just curl into a claw and I couldn't move it. It started when I was cooking dinner and I'm still seeing minor signs of it this morning. Another thing to talk about with the doctors today.

The good news is that the other parts of my body are continuing to heal nicely. My eyes are almost 90% normal, with just a little bit of redness below one eye. But they're not scratchy or itchy and I feel like a normal person again. The puffiness in my face and legs continues to subside as I taper off of the Prednisone steroid, and my weight is starting to come back up again. The dry/cracked skin on my hands is improving each week. Up until last week I was using Eucerin creme twice a day, which is like a petroleum jelly, just to keep them from cracking. Now they look the same color as the rest of my skin and are mostly back to normal.

My main issues/annoyances now are:
- urinary tract infection
- sudden hand/finger cramps
- rash on inner thigh
- tremors
- "hot hands"

Ever since I've been in the hospital I'll go through several hours a day where my hands feel hot, as if I'm holding them over a hot burner or am holding on to a hot plate. I think this is due to the Tacrolimus medication, one of the medications that prevents GVHD. My hands aren't actually hot to the touch, but the sensation for me is that they're being subjected to very hot air, so I find I have to be careful running them under water or touching objects since I can't tell how hot anything is. Even lukewarm water feels like it's boiling. Plus, it's just annoying when you're trying to do normal stuff and you can't get your hands to cool down.

The home delivery started yesterday for my supplies and prescriptions, and it looks like this will be really convenient. Every Friday after my blood draw, they'll call the SCCA to see if any of my prescriptions need to be changed based on the results of the blood draw, then they'll call me to see if I need any additional supplies. It will be great to be on a regular schedule since up until now we've picked things up as needed each time we're at the clinic, but it's easy to forget. I returned the old IV pump and backpack, and Apria delivered a new one with a much cooler side-holster bag to hold the IV pump and fluid. Basically it's like a tall water bottle holder, and since it's so narrow it snuggles up more closely on me and doesn't slide around. I guess I've upgraded from the "IV Purse" I've been using :) Here's a picture of the new holster bag, the IV magnesium bags, and the various things I need to get hooked up each day.

Day +35 - Couple more bits of good news

Today I had my last transfusion of Mesenchymal stem cells. The transfusion itself doesn't take very long, but there is a 2-hour follow-up period afterwards so that the nurse can check vital signs every 30 minutes to make sure there aren't any adverse reactions. Luckily the SCCA has wifi and a kitchen with snacks like cookies and ice cream and foods like mac & cheese (yum), so the time passes by relatively quickly. I've also been sending my mom out on errands each time to pick up supplies and prescriptions so that we make the best use of the time, since sometimes it takes multiple trips to the pharmacy or supply cabinet. But each visit ends up being about 4 hours total so it's nice to be able to cross this off as one less thing I need to do.

During the transfusion the doctors came by for a visit and there wasn't a lot to talk about since my counts are looking good and we're not seeing any adverse side effects or GVHD. The good news is that they are starting me on oral magnesium pills tomorrow, which means that we're starting down the path to ween me off of the IV magnesium. The reason I've been on IV magnesium is that the oral pills can wreak havoc with your digestive tract, so for people who've just had a transplant it's not an option since your digestive tract is completely screwed up. But now that mine is returning to normal, we'll start with a low dose of oral magnesium in addition to the IV magnesium to see how things go, and if everything looks good we'll increase the oral dose until I no longer need the IV bag. Even though it only takes an hour to infuse the IV magnesium, it will be nice to have one less task to plan and take care of during the day.

The other thing that's changing is that my supplies and prescriptions will be delivered directly to the house starting next Monday, instead of me picking them up from the clinic every few days. This is great, since I'll be able to just call in an order and they'll stop by with the goods. Sometimes I've had to run over to the SCCA on weekends for more IV magnesium bags, for example, since they only give me 3-4 of them at a time. Having everything delivered at home will be awesome.

Then, on top of all that nice news, my nurse said he would suggest to the team that I only come in for clinic visits once a week. Woohoo!! It makes sense, since my visits will now just be for blood draws (15 mins), chest x-rays (15 mins), seeing the doctors (30 mins), seeing the snot guy (15 mins), and meeting with the nutritionist (15 mins). And I bet my awesome team scheduler, Troy, will book them back to back so that I'm in and out in no time. I'm very excited about this, since the less time I spend at the clinic, the more I feel like a normal person.

Being able to check these things off the list makes me feel like we're really making progress, and it feels great :)

Day +33 - Pathologist's report

Here's me looking happy after re-reading the pathologist's report from the bone marrow biopsy I had last Monday. You can also see that the whites of my eyes are finally starting to become visible. My eyes are less itchy now too, and they aren't getting wet and blurry all the time. The technical term for what happened is that I had a subconjunctival hemorrhage, and now that the itchy, blurry side effects are gone I feel that much closer to feeling normal.

The pathologist's report is a multi-page document detailing the results of the various tests that are run on the bone marrow biopsy and aspirate samples. The biopsy is the "core sample" taken from the hip bone and the aspirate is the bone marrow liquid that's sucked through the little corkscrew they stick in your hip. What was exciting, or non-exciting I suppose, about this report was that the overall final diagnosis was the shortest description I've seen on a pathologist's report so far. Essentially, there wasn't anything to talk about! Here's how it reads:

Final Diagnosis: Bone marrow 27 days post-transplant showing normocellular trilineage hematopoiesis with no evidence of dysplasia or increased aberrant myeloblasts.

Those have to be the sweetest words I've seen in a while. The phrase "normocellular trilineage hematopoiesis" means that the blood stem cells are maturing normally into all 3 blood components (red blood, white blood, and platelets), and the phrase "no evidence of dysplasia or increased aberrant myeloblasts" means that there are no dysplastic (abnormal) blood components or stem cells to be found. Basically, these flow cytometry and various other tests they run are the most sensitive kind of tests for this stuff, and can pick a single abnormal cell out of billions. Normally the final diagnosis includes several paragraphs on all the abnormalities and dysplasia found in each of the blood types, the presence of excess blast cells, irregularly shaped blood components, and lots of other esoteric problems which I'm sure gets the lab technicians all excited. So it was really inspiring to see such a short and healthy description.

It's been a month since the transplant and it already feels like 3 months. The days are flying by and we'll be at the next milestone on Day 50 soon. The next milestone after that is Day 80, when the SCCA lab will run chimerism tests on my blood to see what percentage of blood components are mine versus the donor. Technically I can be called a chimera, a person composed of two genetically distinct types of cells. In Greek mythology, the Chimera was an awesome fire-breathing monster with the head of a lion, the body of a goat, and the tail of a serpent, so maybe being a chimera is pretty cool :) Though the mythical Chimera was killed off by Bellerrophon, the guy who rode Pegasus, the famous winged horse. I'll make sure to be on the lookout for flying horses during my walks.

My white blood counts are finally starting to come back down, after skyrocketing off the charts as a result of the high dosage of prednisone steroids I was on for the first few weeks. I'm now down to 80 mg a day from 180 mg a day. The recovering white blood counts along with all the other good news lately puts a visible look of satisfaction on all the doctors I talk to. Here's a look at my latest white blood counts:



The only new issues that have crept up are these painful rashes in my armpits. Apparently Busulfan, one of the chemotherapy drugs I received before the transplant, stays around in your system and ends up as a toxic component in your skin. Anywhere your body rubs together causes a rash because of it, since the skin gets irritated by the toxicity. It's pretty painful when I lift my arms up, and the skin is broken and red under there, so I have to use powder regularly to keep it dry. The areas that aren't broken have this dark color, which then peels off to reveal new white skin underneath. It's really weird to see. The doctors say it's not uncommon and not to worry. The important thing, they remind me, is that it's not graft versus host disease (GVHD), so other than being super irritating, it's benign.

For the last few days not a lot has been going on medical-wise besides picking up supplies, doing my normal IV fluids or having Johanna change my Hickman dressing. I've been keeping busy eating, playing on the MacBook, staying clean, walking a few miles a day and working on little projects around the house. Friday afternoon I had coffee with some friends from work, some of whom I haven't seen in 2 months. We camped out at the outdoor tables at the pizzeria near our office, munching on pizza and chatting and watching the people go by. I could hang out there for hours doing that, and it was nice to be around my friends again. I think every other Friday I should stop by for more pizza, coffee and socializing.

Last Thursday we had snow, and I'm always happy to have snow in Seattle since it really doesn't last long and adds some variety to the place. Tonight we tried our hands at some pizza using fresh pizza dough from Pasta & Co and trying to get it as thin as possible without tearing. We have a little pizza stone and bought a wooden pizza flipper today, which is the key to getting the pizza on and off the stone. Our 3rd attempt finally produced a really nice thin crust, just like Italian pizzas!


Last Thursday's snow melting off the flagstone path



Our pizza adventures finally produced a nice thin crust. Yum.

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.

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.

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


Re-fueling


The hoody + floppy-hat look

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!

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.

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.

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 :)

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!

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!