Day +91 - I'm a girl!

Well, I'm a girl as far as my blood goes, which is good news! It means that I can now spill blood at a crime scene and get away with it. Just kidding. What it really means is that the graft was successful! We've assumed things were going well based on my increasing blood counts, but this is the first official result that shows the actual percentage of donor cells versus my own cells in the blood. It's called a chimerism test, and for the 3 blood components that are measured, two are 100% donor and the third is 76% donor (26% Steve). The last amount isn't 100%, but the doctors said this is fine. This last amount is for my lymphocytes, better known as the "natural killer" T and B cells, which are one of the types of white blood cells that protect you from viral infections. Wikipedia says that their lifetime is a few weeks to several years, so I guess it makes sense that I could still have some of my own around. Most of the other white blood cells live for just a few hours. Also, the whole point of the immunosuppressants that I've been on (and still am on) is to slow down the new immune system to prevent it from going on a rampage, so it seems like they're doing their job. Though the new immune system did a good job of wiping out all my other blood components, hence the 100% donor cells everywhere else :) One of the types that is 100% donor is my "whole marrow", the blood factories inside my bones, which means that all the stem cells in my marrow are donor stem cells. Super cool!

I also have an official discharge date, which is next Wednesday. That means I have just a few more days of appointments at the SCCA. After that I'm discharged back to my regular oncologist. I'll also have my Hickman line taken out next Wednesday. I've had it installed in my chest for over 3 months now, and while I appreciate having it for some of those monster blood draws and IV infusions, it will be nice to have it out and feel more like a normal person again. The Hickman has also been causing some problems lately. Sometimes, at a blood draw, the end of the line near my heart gets clotted or gets stuck near a valve and the nurses can't draw blood from it. So we try all kinds of things like raising my arms, flushing it multiple times, having me walk around the room, lying flat on my back, etc etc. The nurses can get just as frustrated as me. Last Tuesday it was finicky again and it took about 45 minutes before we finally got it cleared and could draw blood. The solution? A combination of deep coughing and talking. Normally blood draws take just a couple of minutes. And I've had to stop using the tape dressing that covers the point where the catheter goes into my chest since the tape irritates my skin now to the point where if I leave it on for a day, it will peel the skin off and leave a scab. No fun there. So I'm using an alternative gauze dressing that has to be changed every day and before I shower. So as much as I appreciate having the Hickman, I'm ready for this thing to be out.

There was also some minor bad news from this week's clinic visit: I have osteopenia, which is a less severe type of osteoporosis, but it's bone loss nonetheless and I won't get it back. My spine and hip bones showed no loss, but it was in my femur bones that showed the osteopenia. This is one of the side-effects of high-dose steroids and is why I had been instructed to get as much calcium and vitamin D as possible. The nutritionist said that given the super high amount of steroids I received at the beginning and the fact that I've been on them for so long, that I did very well all things considered.

Also in the mildly bad news department, I got a call at 7:30 yesterday evening from a lab tech saying that my Tuesday blood cultures tested positive for "gram-positive rods". Ugh. If you remember, not too long ago I tested positive for gram-positive cocci and had to go on Vancomycin IV antibiotics for 7 days, twice a day. This was the little baby bottle IV infusion kit. I would normally have to go on the same antibiotics for this infection as well, but since I feel fine and don't show any side-effects, we're going to wait and see if the cultures from this morning's blood draw grow anything. If they're negative we'll just assume I got over it, but if it's positive we'll have to do the antibiotics again which might delay the removal of my Hickman a week.

That's it for now. Here's a cool snippet from the final analysis on my cytogenetic tests that were run on my bone marrow. Cytogenetic tests aren't typically run on patients who don't initially present with any chromosomal abnormalities since the testing is fairly labor intensive, expensive, and requires a couple of weeks to obtain results. But the Hutch likes to run them anyway for all patients, before and after the transplant. In a cytogenetic test, a bunch of cells are prepared and stained and 20 are analyzed by a cytogeneticist under a microscope. There are a bunch of cool graphs and detailed explanations, but the part I got a kick out of was the final analysis:

Normal female karyotype, consistent with cells of donor origin. This analysis revealed a normal female karyotype with no demonstrable clonal abnormalities.

I'm not just normal, I'm a normal female! At least as far as my blood goes. So technically I'm a chimera, pronounced "ky-MEER-uh", meaning I have two genetically distinct cell populations. I thought it was cool that the Chimera with a capital C was a mythical monster with the head of a lion, the body of a goat and the tail of a serpent. But Johanna thinks it's more funny that the word's original Greek origin means "she-goat". Ha ha.

So anyway, I now have the blood of a girl. Let the jokes commence.

Day +84 - Biopsy results are good!

Just finished meeting with the docs today, and the results of last week's bone marrow biopsy are 100% normal. Whew! From the pathology report:

No abnormal myeloid blast, monocyte or maturing myeloid population identified. No immunophenotypic evidence of a myeloid stem cell disorder is identified.

This is the 2nd time my biopsy results have been short, sweet and AWESOME! The skin biopsy they did at the same time showed low-grade continuing acute GVHD of the skin, but the doctors aren't too worried about that. If I can taper completely off the Prednisone steroid and still only have low-grade GVHD, no further treatment would be needed. It would only be a problem if it flared up again. So far, so good.

After the clinic visit I stopped by for a pulmonary function test, where they lock you in a tiny, sealed room and have you do various breathing exercises. I did one of these just before the transplant, and the good news is that my lung capacity and pulmonary functions are all normal and unchanged from before. In fact, my lunch capacity is 118% of normal!

Other good news: I'll be stopping the Amlodipine and Prilosec medications today, and the Ursodiol medication in a few days. These drugs counteract the effects of the immunosuppressants which I'm slowly tapering down. For example, the Amlodipine is used to treat my artificially high blood pressure and the Prilosec helps with the acid-reflux that can happen due to all the nausea one experiences after a transplant. The Ursodiol has been used to protect my kidneys during all this, since the kidneys have been working overtime to process all the toxins going through my system. Each time I get to drop a medication, I feel like progress is being made, so this is great.

Last week's bone marrow biopsy went fine, though I started off the day with a migraine and little sleep. It didn't help that the blood draw that morning required me to fast, so I couldn't take any migraine medicine or drink coffee that morning. I brought my migraine medicine to the clinic and popped the pills as soon as the blood draw was over. 30 minutes later, the headache was gone, just in time for more suntan treatment, a visit to the snot guy, and then to be sedated for the bone marrow biopsy. The nurses were funny and my mom watched the procedure again. The room fills up pretty quickly with all the different technicans, nurses, and lab people, and you're hooked up to lots of equipment including oxygen in your nose, a blood pressure cuff, EKG monitors on your chest, and the IV lines feeding the sedative and pain killer drugs. So there are a lot of wires to be careful of. It can be a little intimidating at first. This was my 9th bone marrow biopsy, so it's pretty routine now. I remember a little more of the procedure this time since not as much sedative was used, so I remember chatting a little bit, some of the pain and awkwardness of the procedure, and being wheeled into the recovery room. Usually the last thing I remember is saying how well the sedative was making me feel (it really does make you feel good) and then "waking up" in the recovery room. I like that model better :) Though I usually end up bugging Johanna or my mom by asking the same questions over and over until the amnesiac effects of the sedative wear off. They say it's pretty funny to hear me when I'm like that.

This week I have more workup tests so that the doctors can make a recommendation for my long-term care. I should be discharged in the next week or two. Exciting!

Day +78 - Feeling great!

I feel great today, in fact I've felt great since Monday. I think it helps that I don't have any of those annoying symptoms I've been dealing with for the last month plaguing me at the moment. I feel like a normal person for a change.

Yesterday I had my MUGA and DEXA tests and a clinic visit with my transplant team. I was originally scheduled to have the MUGA test first, which is where radioactive markers are injected into your blood so that they can test how well the chambers in the heart are functioning. But the technician running the DEXA tests said, "Wait a minute, I can't have Steve radioactive for my test!", so we did the DEXA test first. The DEXA test is basically a set of x-rays to measure my bone mineral density. It's done to see how much bone loss I've had since the transplant. I've never had a baseline test, but the technician said they have enough data on what the bone mass should be for a typical patient my age that they don't need baseline tests anymore. After that was done I headed over to the infusion room for my MUGA test. This involves a blood draw, then a half-hour wait while radioactive markers are mixed in with my drawn blood. I went down for some coffee and yogurt while they mixed the blood. After half an hour, they called me back and re-injected the radioactive blood back into me. It was a little surreal, since they use a special lead-lined syringe containing the radioactive blood. It looks like something out of a movie. Thank god for my central catheter, since last time I had a MUGA test it was right after I had a bunch of chemotherapy, and we spent most of the time searching for a vein that wasn't collapsed. It was Christmas eve and I remember it being sort of an awful experience. The Hickman catheter makes all these blood draws and infusions a breeze. Then it was off to a separate room while they ran a special x-ray plate over my chest to measure the blood flow through my heart and arteries. On the monitor I could see real-time images of the blood flow, so that was pretty cool. The recording took about 15 minutes and then it was done. I ended up taking a short nap during the procedure since the pillow and blankets were pretty comfortable.

After that was my weekly clinic visit, for which I got a gold star since there really wasn't anything wrong with me. We talked about my recent visit to the hospital, the skin GVHD which is almost non-existent now, thanks to the PUVA suntan treatments we think, and spent the rest of the time joking around with the doctor and nurses about various things. Each month they rotate the doctor in charge of my transplant team, and this month it's Dr. Doney, a doctor I saw about 4 months ago just before I went in for the transplant. She's very sarcastic and funny, and I can't remember everything we horsed around about, but I left in a good mood. My counts look solid (I've updated the charts in the right-hand column), and we left discussing my transition back to Dr. Goldberg and my long-term care.

Today I'm back at the clinic for an appointment called "Medical Photography", which is where you basically strip down to your boxers and have pictures taken of you for documentation. They took pictures of my hands, legs, feet, chest, head, etc. I thought this was pretty cool, since it gives the clinic a record of my physical condition. A year from now, they'll take another set of pictures for comparison.

Right now I'm in the waiting room on the 6th floor of the SCCA, looking out over Lake Union, waiting to see the clinic dentist to see how well my teeth and gums have fared since the transplant, and then I'm done for the day! The weather is looking great so I might see about taking the scooters out for another spin this afternoon.

Tomorrow I'm free, then I have another bone marrow biopsy on Friday. Each week, one of the vials of blood drawn from me is used to check whether my blood type has changed from O+ to A+, since the donor is A+. As far as I know it hasn't changed yet, since the lifetime of red blood cells is about 6 months which means I still have a bunch of my old red blood cells running around my body. But the samples from the bone marrow biopsy on Friday will be used for a chimerism test, which will give us an accurate measure of exactly what percentage of blood components are host cells versus donor cells. I'm excited and anxious to see what it shows.

Things are looking good! Keep your fingers crossed that the good news continues.

Day +77 - Brief visit to hospital, gut bug gone

It's day 77, and the stomach cramps and frequent trips to the restroom have finally gone away. Whew. What a relief. We don't know yet whether it was a stomach virus or a brief onset of GVH of the gut, but the cramping and diarrhea stopped Saturday and I'm just happy to be feeling better again. Bring on the coffee and spicy food again!

Then, early Sunday morning brought Johanna and I to the emergency room for a brief visit. It started Saturday afternoon. I developed a bad case of sinus congestion and was blowing my nose almost every five minutes. That night I had a hard time sleeping since I couldn't breathe through my nose and I was feeling sort of sick. It was around 3 am when I started getting the chills, and I said, "Uh oh", and curled up into a ball to get warm. An hour later I was sweating. I knew what this meant. I took my temperature and had a fever of 100.3. Not a high fever, but the first fever I've had since I left the hospital. Any fever means you have some kind of infection. It was high enough to meet the criteria for calling the nurse. Johanna originally thought I had said "one hundred and three" so she was out of bed in 5 seconds. So we called the nurse, the nurse said come on down, and we packed and hopped in the car, since we didn't know whether I'd be returning that night, staying overnight, or staying for several days.

We were told to go to the 8th floor at UWMC, which is the floor right above where I had my transplant, so it brought back memories. The nurse at the front desk was expecting us and showed us to my room, and I had a bunch of blood cultures and labs taken, then was sent down for an x-ray. The on-call doctor checked me out and since my fever had gone down, decided to send us home. All in all it was pretty satisfying to see how fast they reacted and how fast we were in and out of there. We were able to bypass the emergency room without having to check in or wait around, and we were back home by 6 am. Johanna munched on a breakfast burrito I had made the day before when we got home, and we went back to bed feeling a lot better.

That was Sunday morning, and I felt great all day Sunday. In fact I'm feeling great today as well. Almost all my symptoms have finally cleared up, except for a bit of a stuffy nose, which I can deal with. I also got notification from my nurse that my last snot sample with the "snot guy" tested negative for the cold virus I had a few weeks earlier. This means I'm no longer in respiratory isolation and can finally enter the SCCA clinic without a mask! Woohoo! I can feel like a *normal* patient again! It's also nice since now the nurses don't have to gown up with gloves and masks either. Good all around.

It's Tuesday now, and since we're nearing my discharge date, I've got a few tests lined up today starting at noon, including a MUGA test and a bone density test to see how much bone mass I've lost since the transplant. The MUGA test involves an injection of "tagging agents", radioactive markers that can be detected by x-rays and are used to see how well the various chambers in the heart are functioning. So I'll be radioactive for a couple of days. Last time they did this, they gave me a special card to show at the airport since apparently people who have undergone MUGA tests can set off detectors used to check for nuclear components. Weird. Then I have a clinic visit later on today.

Wish me luck!

Day +73 - Stomach virus, or GVHD of the gut?

Happy Easter! This cute coffee art was on my latte last week at Cloud City Coffee, one of my favorite neighborhood coffee shops. We've started our daily walks again, a little earlier than usual at 6:45 am so that Johanna can join us and still get to work on time, and Cloud City is our regular destination. Our friend Jenny gave me a pre-paid card with 10 double-short lattes on it, so I've been using that. It feels good to be walking again.

I'm happy to report that my cold symptoms are 95% gone and my last blood test was negative for the gram-positive blood infection I tested positive for last week. I'm off the IV infusions which is great too, even though the baby bottle infusions were pretty simple.

The bummer is that I've come down with some sort of stomach virus. It started a few days ago and I've been having stomach cramps every few hours and riding the white ivory throne pretty regularly. It's no fun. I'm also experiencing nausea and loss of appetite. It doesn't help that I don't enjoy eating as much knowing that I'll be in the bathroom in half an hour. I'm also experiencing an incredible amount of fatigue. I've been sleeping from about 11am until 6pm every day. It's a little discouraging. The walks have been ok, but I can't go a full walk without enduring painful stomach cramps. And as much as I want to force my body to be energetic, each time I get up it's all I can do to keep from wanting to lie down again. It sucks. Coffee doesn't seem to help either. We reported it to my nurse and he called me in for a stool sample, since frequent diarrhea can be a huge problem since it dehydrates the body quickly. A lot of patients end up back in the hospital or on IV fluids. I've been drinking a ton of water to try and avoid this. We'll know next week whether it's an infection or GVHD of the gut. We're hoping it's a virus or an infection, since GVHD of the gut can be hard to treat and can least for years. On top of all this, I've been suffering from some pretty nasty migraine headaches the last few days, so it's been a perfect storm of miserableness.

I feel like the last few weeks have been one step forward and one step back. Luckily, my blood counts have been doing great which I suppose is the real measure of my success. I guess it's sort of like putting a rebuilt engine in your car and finding that the new engine runs perfectly, but that there are some squeaks and rattles in the rest of the car that need to be taken care of. I think the fatigue has to do with the fact that my body has been busy fighting all these infections and is simply exhausted. The steroids have the effect of artificially pumping me up with energy. So as we continue tapering down the dose, I'm starting to see more and more what my post-transplant body looks like, and it looks like it's pretty worn out.

I can't complain too much, since last weekend the weather was awesome and I was feeling great and took the scooters out for some much-needed riding. It was the first ride of the year and it felt exhilarating. They both started up great, and after a little bit of oil and maintenance and checking the tires, they ran perfectly. I've got 7,500 miles on the Vespa and hope to put on a few hundred more in the next several months.

The next milestone is Day 80, which is when I meet with the attending physicians to discuss my discharge date, usually around day 100. This is when I'll leave the SCCA to go back to Dr. Goldberg, my primary oncologist, to discuss and plan my long-term care. Between Day 80 and 100 I'll be doing a whole series of tests, including another bone marrow biopsy, chimerism tests to see what percentage of blood cells are host versus donor, and bone density tests to see how much bone mass I've lost since the transplant. I can't believe the days are flying by so fast. It seems like I'm constantly filling my pill box with another week's worth of pills.

Here are a few pictures of stuff that's happened recently:


An old picture, but it captures exactly how I felt when I took the scooters out.




Cute picture by one of our favorite local artists, Justin Hillgrove. Johanna says I'm the happy robot and she's the little bird.




Johanna working on the garden.

Day +64 - New staph infection (Gram positive cocci)

If it's not one thing... Today I tested positive for gram positive cocci, which is a type of blood infection that includes staphylococcus infections. I'll be receiving Vancomycin antibiotics via IV infusions every 12 hours for the next 7 days to treat it. The bacteria lies dormant in everyone's system but can activate when you're immunosuppressed. Having a gram positive infection is better than a gram negative infection, which can require a hospital stay and close monitoring. This is just a preliminary result, and we'll know exactly which type of gram positive infection it is as the culture continues to grow. We suspect I got it as a result of my immune system being overtaxed due to the cold I'm currently suffering from.

It's a few hours after they called, and I'm in the triage infusion room at the SCCA getting my first dose of Vancomycin antibiotics, blogging away and playing on the web. Having wifi at the clinic is such a treat. The infusion takes 90 minutes which isn't too bad. Luckily I can do the rest of the IV infusions at home. The picture above is an example of the bottle of IV antibiotics that I'll be administering at home for the next week. It's simpler than an IV pump, since it just consists of a pressurized rubber balloon containing the antibiotics inside a plastic bottle. The balloon causes it to infuse at the correct rate, so there's no need to mess around with programming the IV pump with reservoir capacities and infusion rates and such. Apparently the previous system was just a balloon by itself, and the folks at the clinic used to call it the "grenade". Now that the balloon is housed in a little plastic bottle they lovingly refer to it as "the little baby bottle pump".

I was a little bummed to hear about testing positive for this new infection, since I was already feeling a little miserable today because of the the cold I have and the fact that I've been feeling groggy and sleeping a lot because of my latest steroid taper schedule. I actually got the call from the clinic this morning while I was in the middle of a nap, wanting me to come in to the clinic immediately to get the antibiotics, so I was groggy and already feeling miserable. But the staff at the SCCA clinic are just great and really know how to take care of their patients. After arriving at the clinic I was shown into my infusion room with a nice, comfortable chair and a warm blanket. After the infusion started, the triage nurse brought me a hot bowl of chicken noodle soup, crackers, and a bunch of Oreo cookies. She remembered me from last time and we chatted a bit about the weird snowy weather today. The clinic has wifi so I've been happily playing around on the web, chatting to friends online, eating my soup and snacking on cookies. And just now, the Apria homecare delivery person stopped by to tell me how to use the new pump, and to let me know that everything has been taken care of regarding my next week's supply of antibiotics and that a delivery person should show up at my house tonight with the supply. It really makes a difference when everyone is on top of things and everything is taken care of. I'm continually impressed by how things are so well-run around here.

Lately it seems like I've been complaining a lot, ever since I came down with the urinary tract infection a few weeks ago. That cleared up, then I had a nasty wound on my inner thigh when a bunch of skin peeled off after removing the adhesive tape from a recent skin biopsy. That made it hard to move and walk around since the wounds rubbed against my clothes, but that finally cleared up. Then I came down with a cold and have been feeling miserable for the last week because of it. The cold symptoms seemed to be clearing up, but then yesterday my ears plugged up after a lot of nose-blowing. I can handle a cold, but I hate it when my ears plug up since it usually lasts about a week and it's really annoying, and when it happens I've often ended up with an ear infection. Then I started having nasty migraine headaches a few days ago. Now I've got this staph infection. I keep expecting things to continually improve as the days go by, so sometimes I get discouraged when things like this pop up. Johanna says my expectations are too high, and that I'm doing pretty damn good all things considered. I guess I agree. It's probably just a result of feeling miserable and down because of the drugs I'm taking. I've started walking again which has been a huge help, and already I feel better getting such great care at the clinic and knowing that I should be able to kick this staph infection in the butt. I don't even have a fever or any other symptoms (knock on wood), so it could be a lot worse.

I'll post updates on how things are going soon.