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.