Saturday, August 30, 2008

I wanna be sedated!

The biopsy/aspiration on Friday went fine. Johanna was there massaging my back and neck, and with all the sedatives I was on and the fact that I had half a dozen pillows under me, it almost felt like being at the spa! Well, not really. But seriously, that stuff makes you really relaxed, which is the best way to go into one of these things I think. The sedative is called Versed which can also make you forget things. I don't rememember forgetting anything (haha) but I guess others "wake up" and have no recollection of anything that happened while on the drug. I just remember Dr. Goldberg joking around during the whole procedure and singing songs! He would say "this might hurt a little" and then would sing "do you really want to hurt me?" from the Culture Club. Or even better, after talking about how happy I was on the sedatives he started singing "I wanna be sedated" from the Ramones! Any doctor who can quote old-school punk rock bands during surgery is O.K. in my book :)

Anyway, the procedure went fine and we were in and out in about 2 hours. Though I was really groggy afterwards and puked a couple times on the way home. Yuck. The feeling was basically the same as being drunk. This was probably because while I was being prepped for the procedure, Dr. Goldberg would ask, "How are you feeling?" and I would say "Oh I'm fine, great, thanks" and he'd tell the nurse "hit him again" and I'd be given more sedatives. It wasn't until I finally responded with, "Heyyyyyy, I'm feeling goooood... let's do this thing" or something like that, that he finally got started :) After we got home I crashed in the bed and didn't wake up until 4 hours later. What a great nap.

Here are some pictures:

This is where the drugs go in

Dr. Goldberg's perfectly prepared slides

The liquid marrow is on the right. Looks like tomato ketchup.

This is the marrow "core sample". It looks like tomato paste squirted out of a tube.

Friday, August 29, 2008

Johanna's update on Steve

Steve has no privacy now- I've hijacked his blog!
kidding aside, the pressure of waiting is really getting to Steve. He's scared and he needs your support. If his friends who read this can give him a call and find ways to distract him, entertain him and make him laugh that would be most helpful. I haven't heard any good laughs from him in a while.

Bone marrow biopsy

I'm going in for a bone marrow biopsy and aspiration tomorrow. Woohoo. I had this done a couple of months ago and it wasn't really that bad, it just felt... weird. The aspiration is where they stick a hollow needle in your bone and suck out the liquid marrow through a syringe. The biopsy is where they essentially take a core sample of your bone including the marrow inside. They normally do both of these on your hip. I remember the marrow from the core sample basically looked like what comes out of a tube of tomato paste. Funky. Luckily I'll be sedated well, but I'll still be awake.

We're doing this because Dr. Goldberg wants to take a look at the marrow before starting the 3rd round of chemo, which would have started last Friday. Up until now we've been primarily looking at the blood counts, but the bone marrow will allow them to better see how well I'm responding to the chemo. So depending on the response we'll continue the chemo or we may postpone it indefinitely. I'm hoping we'll postpone, since it doesn't seem to be doing too much anyway, and the less non-essential treatment the better in my book. So wish me luck! My hip will thank you.

Also I haven't posted in a while, mainly because I feel great (physically, emotionally I've been a little down lately) and I sort of haven't been very interested in getting down and dirty in all the medical stuff right now. My little sister got married last weekend(!) and my friends and relatives have been in town, so I've just been having fun with them and keeping busy and haven't really wanted to think about all this stuff. It's also getting a little harder to deal with all this since there's not a lot of new stuff happening and there is just the dread of the impending transplant. So when I am feeling normal and hanging out with friends and working, it's still a bit of a jolt and kind of a downer whenever I get pulled back into all this. I don't know if I'll ever be able to switch gears smoothly from normal life to being the MDS expert.

Will post more soon. In the meantime, here are some pictures!

At the Radiohead concert with Brian and Johanna (I know I'm not supposed to go to concerts, but I paid a lot of money for these tickets!)

Mmmmm, Brian and I enjoying crepes and coffee

Jenny and Johanna picking Cindy's flowers at Pike Place Market

Happy family!

My little sister is married!

The after-party gang

Sunday, August 17, 2008

Charts of blood counts

I thought it would be cool to add little charts of my latest blood counts to the blog. You can find them on the right-hand column. Hopefully it will help give people a better understanding of what we're dealing with, since I know that for me, looking at the charts is the clearest way of visualizing this disease. It's also kinda cool. I'll try and keep the charts up to date.

The 3 charts show: ANC, HGB, and Platelets. ANC is Absolute Neutrophil Count and measures the bacteria-fighting capabilities of your blood (neutrophils are one of the white blood cells). HGB is short for Hemoglobin, and measures the oxygen-carrying capabilities of your blood (hemoglobin is a protein in red blood cells). And platelets measure the clotting capability.

Below are all the charts:

Jojo gives up some platelets!!

Johanna was a superhero on Saturday and made a platelet donation at the blood bank near our house. For once I just got to hang out and watch, yay!

After answering a few eligibility questions, they put her in a recliner and started setting up the apheresis machinery that would be used to separate the platelets from her whole blood. The machine works by running her blood through a centrifuge which separates the different blood components by weight. Plasma floats to the top, platelets below that, etc. The centrifuge looks like a small washing machine drum and you could hear it spin up once the machine started (in the picture below, the centrifuge is inside the machine, underneath the maze of tubes). See that little yellow bag at the top left? Those are her platelets!

Once they extract the platelets, the rest of the blood is pumped back into the body. I guess in the old days it required 2 IVs, one in each arm for blood coming out and for blood going back in. Nowadays the machines are fancy enough that only one IV is needed and the machine cycles between pulling blood out and circulating it back in. Johanna said it sounds much worse than it is :) Though she said it required some attention to keep the blood pressure at the right amount, which she did by squeezing a little ball. Basically she had to watch the monitor to keep this little bar in the center of the graph. Too low and it was time to squeeze. Too high and it was time to back off.

All in all we were in and out in about 2 hours. They had lots of snacks and things to drink, and everyone was super nice. We went on a Saturday and I was blown away by the number of people who were donating -- I counted probably 10-15 people in the course of 2 hours. Apart from Johanna, everyone was donating whole blood, but one of the volunteers said they typically see about 3 platelet donors a day. Neat!

Go go jojo!

Friday, August 15, 2008

At the ENT - ear infection is gone!

Well the ear infection is gone (or maybe it was something else to begin with), and we were in and out of the ENT in no time. Well it did take an hour and a half. But Dr. Chan was a really cool guy and made the trip enjoyable. He also had on these awesome ostrich skin cowboy boots. I got a hearing test out of it too and am happy to report that all those years of listening to loud music have not affected my hearing at all. Woohoo!

Check out this old-school machinery in the office. Dr. Chan said it was from the 1950's. Love the knobs and switches. I asked if he could make me an espresso.

Me in the chair.

Johanna the giggle girl.

Thursday, August 14, 2008

Ear infection, again?

Quick update: Went in for regular visit with Dr. Goldberg today. Platelets are at 40, down from 63 after the transfusion, so they are still up there (hooray!). Though my white blood cell count and neutrophils are way down again. And wouldn't you know it, that stuffiness in my head and the crackling sound I've been noticing in my ear has paved the way for another ear infection. Great. The last time I had an ear infection it knocked me on my ass for 2 days and was super painful. Luckily this one doesn't hurt as bad and I'm on antibiotics for it already (Levofloxacin -- $10 a pill!), so it should knock it out pretty quickly. Dr. Goldberg also scheduled me to see a good ENT (ear, nose and throat doc) tomorrow morning, which is pretty amazing given that it took my mom several weeks to see the same ENT for her chronic sinusitus.

Other than that, the visit went well. We pored over the fancy charts I put together and got a bunch of our technical questions answered.

The biggest news is that we may postpone or cancel the next round of chemotherapy depending on whether I can get on the AMG531 clinical trial. AMG531 is a drug that has been in the works for several years. It's purpose is to increase platelets (exactly my problem). No other drug has been able to do that, so if we can get the platelets up with AMG531 it's possible I won't need any more rounds of chemotherapy before the transplant. Or put another way, the chemo doesn't seem to be doing enough to bring up the platelets and other blood cells to continue doing it. However, the only way to really tell is with a bone marrow biopsy, so I'm scheduled for another one of those soon. Fun. Here's more info about it if you're interested. My last biopsy really wasn't as bad as I expected so I'm mainly just going for sympathy votes here :)

Oh, and here are some pictures from our trip to Mt. Rainier last weekend!

Hiking the short Nisqually Vista trail.


Awww, poor droopy flower. It'll be ok soon!

Family picture.

The cool spaceship building (visitor center). Too bad they'll be tearing it down soon :(

Bye bye!

Sunday, August 10, 2008

Found an awesome blog

Johanna pointed me at this blog written by a doctor who just last month underwent a stem cell transplant for leukemia. It's the most inspiring thing I've read yet. This guy is really a fighter, and is determined to blast his way through his disease and post-transplant issues. It's also very enlightening and has given us a lot more insight as to what to expect in the days leading up to the transplant and what to expect after (I read through his whole blog in earnest starting from his first post). Short summary: the 30 days after the transplant are going to be very, very hard.

Here's an example of some great advice he got from his doctor friend about what to expect during the awful days post-transplant:
Dr Z's advice is to not climb on the roller coaster. Don't get too celebratory over the good days and certainly don't get too down over the bad ones. That takes too much energy! Expect highs and lows. Remember the good times, because you will be coming back to them, but try to stay centered and focused on the long term goal of beating this cancer. That old Zen magic, the middle way again.

So check out this guy's blog:

I've also saved you some time and have picked out a few of my favorite posts :)
Traits of a Warrior
To show me how to ride the ultimate wave Beach Boys or HOW I SAVED MY LIFE
Bad to the Bone George Thorogood and also CLL Canada
Letter FROM My Donor
"It's been a hard day's night" The Beatles
Nice and easy does it every time
The Stranger Song by Leonard Cohen

Transfusion #2 - so good so far

I didn't get a chance to follow up on Friday, but after my blood work Friday morning we found my platelets to be at 10, so I was scheduled for another platelet transfusion that afternoon. Like I was telling my boss, the hardest part is dealing with the emotional roller coaster of feeling perfectly normal one day and being back in the hospital the next.

But the transfusion went fine, though after it was done and we were walking to the elevator, I found myself itching my arm a little more than normal. I looked down and saw a big red hive flaring up. Then I noticed I was itching around my face and ears. Uh oh, back to the nurse as this is a common side-effect with transfusions and can be a problem if it gets worse. The option is to take Benadryl right away, but I didn't want to be knocked out the rest of the night. So we waited it out and it went away on its own after a half hour. But man, during that half an hour it took some serious discipline not to itch those huge hives on my neck and arms! Wow.

Monday we'll go in for more blood work to see what my platelet counts are at (hopefully they'll be way up there!) and then hopefully next week we'll hear from donors. Woohoo!

Thursday, August 7, 2008

Platelets on a rollercoaster

Well, after cruising for a week high on sesame oil, today's blood test revealed that my platelet counts have been sliding and are now back down to 12. This isn't totally unexpected, since it's the same thing that happened *last* time during the chemotherapy cycle (the counts dropped the week after the chemo finished). But it wasn't the good news we were hoping for.

So tomorrow we'll go in again for another blood check and if we find it's dropped below 10, it's likely we'll do a transfusion. Ugh. Watching these platelet counts go up and down is too stressful, it's like watching an episode of Lost.

On a positive note, my white blood counts are at an all-time high. So I'm definitely glad to have that since it means I don't have to worry so much about getting sick at the slightest touch.

Will keep you posted.

Tuesday, August 5, 2008

Blood Cells in a Nut Shell

On the topic of charts, I've been meaning to post some graphs that show what this disease actually looks like from a higher-up perspective and how we've been tracking it. Some people have asked whether my counts have returned back to normal after the chemo, or when they go up or down, *how much* they're going up or down.

The short answer is: no, the counts have not returned to normal. They've gone up and down a little bit, but they are still way under where they should be. From what I understand the purpose of the chemo is to help get your counts to somewhat reasonable levels in preparation for a transplant, since you need all the reserves you can muster. So a transplant is still imminent and is the only way we know that has a chance to actually *fix* the problem. In fact, after tracking such low counts for so long, I called to get my old medical records from 2001 (the last time I had my blood checked) to see if I was *ever* normal, since apart from the chemo I don't feel like I'm sick and it's hard to know when this thing actually started. But at least in 2001 I was normal :)

Anyway, the 3 main things we're looking at regularly are:
- Platelets
- Neutrophils (polys)
- Hemoglobin

The way to look at it is this - there are 3 types of blood cells in your body: red blood cells, white blood cells, and platelets. Each has a different purpose, but in their most basic form the red blood cells carry oxygen to your body (and CO2 back to your lungs) via a protein called hemoglobin, white blood cells called neutrophils fight infections and diseases, and platelets help your blood clot. So platelets track platelets, neutrophils track the bacteria-fighting capabilities of the white blood cells, and hemoglobin tracks the oxygen-carrying capacities of the red blood cells. This lets us track the 3 blood cell types by the role that's most important.

Here's a graph of my platelet counts since I was diagnosed in June, and the range where the counts should be:

So you can see that they've gone up and down a little bit, but they're still very low, and each time we do a CBC (complete blood count) test the lab technicians re-check the values by hand and flag them with a "Critical Level" note and get verbal confirmation from my oncologist's assistant. So every one of my lab charts have all these little exclamation points all over them.

Anyway, as you know by know, platelets, or thrombocytes, are tiny little blood cells responsible for clotting. Not enough of them and you run the risk of bleeding into the brain, since some clotting is always needed to protect the blood from just running freely all over the body. Apart from bleeding and bruising, there aren't really any noticeable side effects that affect how you feel. Their average lifetime is about 9-12 days.

Here's a graph of my neutrophil (or poly) counts:

There are 5 basic kinds of white blood cells: Neutrophils, Lymphocytes, Monocytes, Basophils, and Eosiniphils. Each serve a slightly different purpose. Neutrophils are in the class of polymorphonucleic cells (e.g. polys) and are the most abundant white blood cell. They are the main bacteria-fighting agents and are the first line of defense against infection, so they're tracked more closely than the others. Neutrophils can travel all over the body and are what give pus it's whitish/yellowish appearance. A low neutrophil count can lead to constant infection (e.g. runny nose, stuffy head) until it gets serious enough that your body can't even fight its own bacteria. The lifetime of a neutrophil is just a few hours, so there's not much you can do about transfusing them. Antibiotics are normally prescribed to help out if these fall too low. When my neutrophils were really low back in June, I remember having a runny nose and sore throat a lot of the time. Check out this cool video of a neutrophil eating bacteria.

Here's a graph of my hemoglobin counts:

A low hemoglobin level is referred to as being anemic, and indicates problems oxygenating the body. It leads to shortness of breath and in some cases cognitive problems (you gotta feed the brain somehow). Hemoglobin is a protein in red blood cells that is responsible for actually carrying the oxygen molecules around and is also what gives red blood cells their color. It's possible to have a normal red blood cell count but low hemoglobin levels, so measuring hemoglobin is a good way of measuring the body's ability to deliver oxygen and transport CO2 to the lungs. Hemoglobin levels below 5 are critical and from what I understand you have serious problems even standing up at this point. When they get this low, you need what's called a packed red blood cell transfusion to help boost the red blood cell counts, and thus the hemoglobin levels. The lifetime of a red blood cell is about 4 months. So far I haven't felt overly fatigued to the point of exhaustion (at least outside the worst part of the chemo), but there have been occasions where doing something like starting the lawnmower or running up a flight of stairs left me more winded than I remember.

Each one of these low counts has a name (e.g. thrombocytopenia, neutropenia), but low counts across all blood types is called pancytopenia. It's one of the signifying factors in MDS and is a result of the bone marrow not being able to produce *any* kind of blood cell very well.

So there you have it! Blood cells in a nut shell.

Sesame Oil?

Here's a fun chart of my platelet counts since I was first diagnosed in June:

After the first round of chemo (6/26 - 7/2), you can see the platelet count drop to a precipitously low level on 7/11. The spike on the 14th is the result of the subsequent platelet transfusion. The counts went down again (expected since they don't live long), but the good news is that they've stayed relatively higher than they were before. This could be a result of the chemotherapy, but I want to believe it's the sesame oil I've been taking! Let me explain.

If you remember, two weeks back we met with a naturopathic oncologist. The consultation went great, and one of the things he recommended trying was sesame oil, since in some cases it had been shown to improve platelet counts. This was based on some clinical data that had been observed on primates in captivity in which they found that these primates had strange bleeding problems due to low platelet counts. It turns out their diet didn't include the same amount of sesame oil they were getting in the wild. Some studies were done, and they did in fact find a scientific link between sesame oil and platelet production.

The naturopath recommended 2 tablespoons of pure sesame oil a day. We figured it was worth a try, especially since he didn't think pineapples were going to be a big help :) After leaving his office we bumped into an old Chinese woman in the waiting room who had overheard us, and she raved about how sesame oil had worked wonders for her. In fact, she said her platelet levels had gone too high - so they cut her back to only a couple teaspoons a day. Now, she says she only needs to rub it on her wrists and she can almost regulate her platelet levels. Well, after reading other anecdotal evidence about it online and finding some vague clinical data to back it up, I figured it was worth a shot.

We found the specific brand at Whole Foods and I started taking it the same day. The brand is Rapunzel and it's important to get it cold-pressed, not toasted like some of the kinds you find at the asian markets. It doesn't taste like much, and it's not too hard to drink. Some people have found it's easier to take mixed with yogurt, but I haven't tried that yet. By the next blood test my counts had only dropped by 1. A few days later they actually went up from 22 to 30! This was fairly significant, since apart from the transfusion and a couple minor blips, we had watched the counts drop depressingly from blood test to blood test ever since I was diagnosed. Not once had we seen them jump up by this amount.

If you look back at the graph again you can see them pop up. I'm cautiously optimistic about the whole thing and don't want to jump to conclusions, but hey, it's kind of cool! My main oncologist kind of laughed at the whole thing but agreed, "sure why not, keep taking it!" We've also been walking 2-3 miles a day and I've been trying to eat healthier, so it could be anything. But, wow, maybe it really does work!

Monday, August 4, 2008


Also here's an interesting tidbit I bet you didn't know: transplant recipients inherit not just the blood type (e.g. O+) of the donor, but also any allergies. That's right, I've read stories where the transplant patient had a successful transplant and then contacted the donor to say, "Thanks for the stem cells, the transplant went great. By the way, are you allergic to peanut butter? Because I can't eat it anymore." And they find out the donor had an allergy to peanut butter!

I've never had any allergies, so I'm not even sure what to expect here. I also know it's totally trivial to be worrying about something like this in the grand scheme of things. But it's still kind of interesting. What if the donor didn't tell anyone they were allergic to peanuts and the patient died because they had some nuts after the transplant? Or what if I inherited other things from the donor, like a love of classical music and literature? The mind can only wonder...

By the way I went cold-turkey on sodas and soft drinks and fast food a few weeks ago, and it feels great. For as long as I can remember I've had a Coke or soft drink at least once a day. Now they just taste syrupy and acidic.

Transplant, onward ho!

Hi all,

Some quick updates: Friday they requested samples from the 4 potential donors (the three 6/6 matches and the 9/10 match) to be sent to the lab here in Seattle. It takes about a week to hear back, so the next news we’ll hear is whether the donors are in fact findable and a scheduled draw date, or if they’re not available. I asked and they won’t tell me who or where the donors live (or vice versa). I can only know after the transplant. It's probably a good thing, since I expect my donor to be some strapping young 24-year-old marathon runner :).

Also, I have a better idea of the events leading up to the transplant after talking to a registered nurse at Regence BlueShield who deals specifically with people getting transplants (I didn’t even know they had people in that role at an insurance company). So she’ll sort of be my advisor throughout the transplant process. Have you heard of anything like that from an insurance company?

So here’s what things look like from here on out:

1) Wait for donor
This is where we are now. From what I understand a transplant date could be set in as little as 1-2 months depending on whether the donors are eligible.

2) Final evaluation (2 weeks of testing)
We’ll receive word that a transplant date is set, and something called a “final evaluation” will be run to decide how best to wipe out the existing marrow. This is the part where they figure out how my body reacts to various treatments so that they know which treatment will have the best chance of wiping out all the marrow and blood stem cells leading up to the transplant. The final evaluation is said to take 2 straight weeks of testing 8 hrs/day. I can go home at night. So from what I understand, during these 2 weeks they’ll be running all kinds of tests to figure out whether to use chemotherapy or irradiation, or some combination of both and in what dosages to figure out how they’ll prepare my body for the transplant. The woman said they run a lot of tests, probably to see how my entire body reacts to everything. I can only imagine :)

3) Transplant preparation (intense chemotherapy/irradiation for 3-4 days)
This will consist of the chemotherapy or irradiation (or both) for 3-4 days before the transplant, in which I’ll be in the hospital. They say it could be a few days longer depending on the results they get during the final evaluation. This is the part where they fully wipe out all the marrow and blood stem cells, leaving 0% left. Whether it’s chemo or irradiation or both, in any cases these are lethal amounts. This is the “in limbo” stage where a donor that chooses to back out (hopefully not) would be life-threatening. I think I lose my hair finally during this part. Though I heard that sometimes your hair grows back differently or can even grow back fuller than it was before. Wouldn't that be weird if I ended up with a full head of curly hair afterwards?

4) Transplant preparation (rest up for 2 days)
Finally, there are 2 days of rest to give the body time to recover after all the treatment and to ensure they successfully wiped everything out, before the new stem cells are grafted.

5) Transplant (2 hours)
The transplant itself is actually the simplest part, and consists of hooking me up to an IV drip with a bag of blood stem cells. It takes about 2 hours to infuse the stem cells. This is called “day 0” in my new life :) The stem cells are smart enough to know how to travel through the bloodstream and find their way back into the bone marrow, so that they can start making new stem cells and blood cells. Pretty amazing stuff.

6) Post-transplant (3 weeks in-hospital)
There will be 3 weeks or more hospitalized stay after the transplant. Essentially I’ll be isolated in a special transplant ward where I’m on a different ventilator system and guests are required to wear masks and gloves, etc. No one with runny noses, sore throats, kids are allowed. Apparently an alarm goes off if the door to the room is open for longer than 30 seconds. During this time I’ll be getting blood draws continuously and will be getting regular transfusions since it takes a while for the new stem cells to start producing adequate amount of blood cells on their own. They expect transplant patients receive about 120 units of blood during their stay. For comparison I received 4 units during my last transfusion.

7) Post-transplant (1-2 months at home)
After the 3 or so weeks in the hospital, I can return home but will be returning to the hospital for about 2 hrs/day for blood work every day to administer more transfusions if needed. There is a whole list of rules I’m subject to during this period, like bleaching all countertops and surfaces, being on a specific diet, no restaurants or grocery stores, etc.

8) Transplant complete!
They warn me that it can take a year after the transplant itself to make a full recovery, but given my age I’m sure I can be back to normal sooner than that.