Spinal tap headache hell

UGH, I've been in spinal tap headache hell all all weekend. No, I haven't been listening to the band Spinal Tap too much, or turning things up to 11. Let me explain.

Last Friday I had a spinal tap, or LP (lumbar puncture), to make sure I have no leukemic cells in my spinal cord and central nervous system. If I did, we'd have to do what's called intrathecal chemo which is basically where they do another spinal tap to administer the chemo drugs directly into your spinal cord. A spinal tap itself consists of sticking a 4" long very thin needle into your spinal cord. The clear spinal fluid drips out of the needle and can then be collected in a small vial. Compared with a bone marrow biopsy where they literally take a core sample of your bone using a corkscrew-like device (they did a biopsy on me just after the spinal tap), a spinal tap is relatively painless. Johanna was there taking pictures, which pleased the doctors and nurses to no end, since how often do they get to see pictures of themselves at work? It's not like they can say to the other nurses, "hey man, can you, uh, take a picture of me doing this spinal tap thing so that I can show my friends?". Seems like it would be kind of embarrassing. So when they saw Johanna bust out the iPhone camera they all got big smiles on their faces and even moved aside to let Johanna get better pictures. The nurse doing the spinal tap gave me her email address, and after I emailed her the photos she sent a nice response back.

Anyway, the spinal tap was a breeze, less painful and less sore than a bone marrow biopsy, but holy cow the side-effects are a major PAIN IN THE ASS. They warned me of something called a spinal tap headache, which is caused by the body compensating for the spinal fluid that was taken during the spinal tap (3 small vials). So they said load up on caffeine as much as possible. Easy enough I thought. I'm good at that. So Friday afternoon I loaded up on lots of coffee and felt great. Saturday morning I lounged around and watched TV. But by Saturday afternoon I felt the headache coming on, and it came on HARD. By then it was too late, the headache was so bad I couldn't keep anything down and was curled up in a ball on the couch and praying to the porcelain gods all evening. Around 11pm we finally called the nurse and she recommended dissolving an anti-nausea pill under my tongue since I couldn't keep water down, then taking tylenol a half-hour later. That seemed to help enough so that I could get some sleep. But I've been struggling with this stupid headache for the last few days now no matter how much coffee I drink. What a pain. The only way to make it go away is to lie flat on my back, but that's not very fun for very long.

Yesterday we got the results of the spinal tap back and it showed no signs of leukemia in the central nervous system, so that's great news.

Here are some pictures from the spinal tap and bone marrow biopsy so you can get a taste of things from the front-line. I hid them behind links for those of you that get squeamish (they really aren't so bad).

Collecting spinal fluid into a vial
Collecting liquid bone marrow

Ugh, transplant postponed for 6 weeks

Seems like we've hit a speed bump, or rather, a large hole in the road on the way towards the transplant. It's day 2 in the "program" and after a full day of tests, our last meeting of the day was to discuss my case with doctors from the transplant team. Seemed like fun. Well, it didn't take long (about 3 minutes) before they dropped the bomb - they wanted to put the brakes on the transplant and do a round of induction chemotherapy before continuing. Crap. If you remember, we considered doing this about a month ago and decided against it since the bone marrow blasts were looking OK. There was even support for not doing it by some doctors at the Hutch. But as we've learned, there never seems to be one "right" way when it comes to cancer, and a lot of it simply comes down to a doctor's gut instinct. And right now there are a lot of doctors that just don't feel comfortable with me going into a transplant with my disease at the level it's at. Induction chemo is relatively intense, and it will require an additional hospital stay of 4 weeks and then 2 weeks of recovery after that. But it should put the disease into remission or at least make it less severe. So even though it's more aggressive and delays the process, we'll do whatever it takes to have the best chance at success for the transplant. That's our #1 goal.

But after such a good experience yesterday and for most of today, I feel like we just got kicked out of the cool kid's club. Everyone is so friendly and everything is so *organized* at the Hutch. There are also people of all ages there that don't look sick at all, unlike at hospitals or medical centers. It was nice for a change. So anyway, I'll probably go into the hospital at Swedish next week for about a month, then 2 weeks of recovery, then we'll start where we left off at the Hutch. It's kind of a bummer, but it's the right thing to do.

Here's what our day looked like today:

10:45 - 11:15 Patient Finance
This was a meeting to make sure we have the insurance coverage to finance a transplant, which is very expensive (it's mind boggling). Or rather, the Hutch wants to make sure they're going to get paid.

11:15 - 12:00 Nutritionist
A nutritionist went over what I can and can't eat with my immune system as low as it is (I forgot I wasn't supposed to eat Miso soup) and gave an overview about what I'll be able to eat after the transplant. The good news is that it's not as restrictive as we thought. She also gave me an "A" for nutrition since I have good daily eating habits, my cholesterol and triglycerides were great, and my other food-related blood counts were all good. Woohoo! It's nice for a change to hear that *some* blood counts are still OK.

12:00 - 12:30 - Chest X-Ray
The technician let me pore over the x-rays and I had fun tracing my PICC line and looking around at various organs inside me.

12:30 - 1:00 - Lunch
Good old cafeteria food. It wasn't bad actually. Today they had meatball sandwiches and spaetzle to choose from.

1:00 - 2:00 - Social worker
We met with a social worker who is there to help us through the whole process and make sure we're taking advantage of all the kinds of services the Hutch offers. Basically he asked all sorts of challenging and personal questions that made us cry a little.

2:00 - 3:00 - Dentist
The Hutch has their own dentist, since tooth and gum decay can be serious issues when undergoing a transplant. But the dentist was very happy with me and I got another "A" for the day. Woohoo! The funny part was that a few residents from UW came along with the dentist, and as the dentist peered into my mouth, so did all the residents. So as I'm looking up at the ceiling, I'd see the dentist hovering over me, then 3 other heads would pop over me as well. And the other heads looked like they were trying really hard to see something important. It was pretty comical.

3:00 - 3:30 - Blood Draw
This blood draw was actually scheduled for 12:30, while we were at lunch, which we thought was funny since they didn't actually give us the updated schedule until 1pm. All in all we had 3 schedule changes in one day. They run a tight ship, for sure.

3:30 - 4:00 - EKG
After the EKG we actually got to rest on the bed for 15 minutes, which was the first chance we'd had to relax all day. That rest helped us get through the next appointment...

4:00 - 5:00 - Conference with transplant doctors
This was when everything fell apart. After only a couple of minutes of being in the room, he wanted to know why we hadn't done induction chemo. We could tell he was genuinely surprised. So then he got on the phone and we had a conference call with other members of the team including one of the senior members of the Hutch whose specialty is MDS. To make a long meeting short, we agreed with them that we should do induction chemo and put the whole transplant thing on hold. It was a tough decision, especially since we'd already had the discussion a month before and at the last minute decided against induction. But our goal has always been to maximize the chance of a successful transplant, since our biggest fear is that it simply won't work, and we're willing to treat it as agressively as possible since I have age in my favor.

5:00 - 5:30 - Replace dressing on PICC line
Another week, another PICC line dressing change. I'm beginning to enjoy the PICC line more and more and it's less of a bother each day. The only bother is having to wrap it in saran wrap to take a shower, but it's not too big of a deal.

Tomorrow we're scheduled for more blood draws, an infusion of platelets, and a spinal tap. Should be fun :)

1st day in the transplant "program"

Yesterday was our first day in the transplant program at the SCCA (Seattle Cancer Care Alliance), or "Hutch" as they call it. This means that for the next 3 months, we're on a well-known and rigid schedule, and essentially all of my care is now transferred to the transplant team who will follow me very closely during this time. So it feels like we've entered that next phase of things, like graduating high school and starting college. I felt comfortable with Dr. Goldberg and we'd sort of gotten into a routine with regular blood draws and visits, and the occasional chemo treatment and transfusion. So this next step is a big step for us since we're officially on the transplant path now and there's no turning back. Things are also very specialized now since we're dealing with doctors and nurses who understand exactly what I have and what I'll be going through.

Anyway, it was a relatively light day with the following schedule:

• 11:00 - 12:00 Blood work (8 small vials and 2 large ones, super easy with the PICC line)
• 12:00 - 1:00 Lunch (we walked down to Grand Central Bakery for a great cup of soup and sandwich)
• 1:00 - 3:00 Meet with team nurses for physical exam and orientation

I've been assigned to the YELLOW team, which means that for the next 3 months I'll have the same nurses, physicians, nutritionists, and team doctors attending to me. There are 12 teams in all, 3 for children undergoing transplants, 3 for autologous transplants (using your own stem cells), and 6 for allogeneic transplants (using the stem cells of another donor). The amazing thing is that there are about 120 people in the program at the Hutch at any given time. That's a lot of people undergoing transplants! The Hutch does about 400 transplants a year which sounds about right since you're in the program about 3 months.

Anyway, the nurses we met were very nice and had great bed-side manners. Neither of them were in a hurry which was great and both were funny and very happy to answer our questions. They sent us home with a 1-inch thick binder full of information and resources, and probably a hundred or so pages of consent forms and clinical studies to sign. There is a person on the team responsible for scheduling, and he printed out a detailed calendar of all our upcoming appointments for the next couple of weeks. And we even have a mailbox where we can pick up copies of our labs and other things like schedule changes. Very cool!

Here's a picture of the SCCA buildings. They are within walking distance of Johanna's work.

George and Brian in Seattle

My best friends from college came to visit last weekend and we had a blast. The three of us used to pal around in Albuquerque starting all the way back in 1993 (George was my roommate twice) and we've kept in touch ever since. Johanna and I visited Brian in Paris a couple of years ago, George and I visited Brian in D.C. the summer before last, and George and Brian have visited me in Seattle a few times. It's awesome to have friends like that and it's really special that we can all get together as often as we do.

We kicked off the weekend by carving pumpkins at Jenny and Greg's house where Jenny and Johanna kicked ass with their mad pumpkin carving skills. The next night we had a party with a bunch of friends to wish me well and send me on my way to transplant-world (I try to have a party whenever Brian is in town - he likes that). George brought a bunch of scary movies so we watched a lot of Psycho, Frankenstein, Night of the Living Dead, Nosferatu and Sweeney Todd during the night. A *lot* of Sweeney Todd.

Between pumpkin-carving and partying, our goal for the weekend was to drink lots of coffee, watch lots of Dexter and Flight of the Conchords, act and do like tourists do around Seattle, and eat spicy Mexican food for every meal. We failed miserably on the last one, but exceeded expectations for all the others :)

Luckily my other job of dealing with pre-transplant stuff was pretty minimal while they were here, and I only had a single appointment to get a platelet transfusion. George was nice enough to hang out with me while I got the transfusion, and Brian was nice enough to park the car in the rain since we were running late :)

Anyway, it was a great weekend and just wanted to say thanks guys for coming out. I had a great time :)


Party time


Johanna's mad pumpkin carving skills


Groovin' on the beach


Making waves


Steve and George

More platelets

Apparently the last round of platelets didn't take very well. On Monday I had a blood draw and the nurse called me back later to tell me that my platelets were at 6 and I had a transfusion scheduled for later that day. Bummer! The normal range for platelets are between 150 and 400, so 6 is pretty damn low. Anyway, my friends George and Brian were in town so George hung out with me while I got the transfusion (it was just after taking Brian to the airport) and was even a good caretaker by pointing out to the nurses some hives that had popped up as a result of the transfusion. All in all it ended up being just an annoyance and was the only major appointment I had while my friends were in town, so it was all good.

Chemo: full-time job

Last Friday was the last day of chemo for this round. Even with the PICC line it still takes about 3 to 4 hours a day to administer all the drugs. It's like my 2nd job! I calculate that I was in the chemo chair for about 18 hours last week. Wow.

Saturday and Sunday were spent resting and relaxing, though we did manage to get down to the pumpkin patch to pick some pumpkins and gourds. Yesterday was also Johanna's birthday and we had fun celebrating that at my parent's house last night.

Steve gets a PICC

Saturday I got a PICC line. Woohoo! Today was the first day of the 4th round of chemo and it was *much* more enjoyable because of this. Instead of poking me in the arm looking for a vein each time, all they had to do was plug me into the IV drip and that was it. Also, the PICC sticks out of your upper arm which makes it a lot easier to move around while the drugs are going in (which can take a few hours), compared with having a normal IV poking out of the back of your hand or forearm. That was a pain and made it annoying to do things like eat or read a book.

A PICC, or peripherally inserted central catheter, is basically an IV tube that is poked into your arm and threaded up a central vein all the way to your heart, into the SVC (superior vena cava). I had a single-line PICC put in, but they make them in multiple-line versions as well. It's been in 2 days and I hardly notice it's there, but I'm having a lot of fun showing it off to people. I feel like Iron Man. It's actually called a PowerPICC and the tubing is purple. The web site hypes it hard, with fancy graphics and sound effects. I think I even saw a slogan like "get the power of purple" somewhere in there. Wow.

Anyway, the procedure wasn't that much more complicated than running a normal IV line into your arm, except they spend a *lot* more time making sure everything is super sterile. More than half of the procedure was spent sterilizing everything, not because the tube goes near your heart, but because it's in your body for so long. The risk of infection is a big deal. I was covered from head to toe with paper except for a little cutout where the tube went in my arm, and the nurses not only had masks but plastic face shields as well. Crazy. But done properly and the same PICC line can be left in for up to a year.

They used a couple of cool technologies to actually insert the line. The first was a simple ultrasound (complete with goopy stuff on the end) to figure out which vein to go into, since on your upper arm your veins aren't visible at the surface. On the screen I could see a cross-section of my arm and the vein clearly showed up as a big black hole. It was kinda cool. She smashed it around a bit with the ultrasound tool and you could see it pop back up each time on the screen. I asked if it was a boy or girl (haha). Then, using the ultrasound, they poked in a needle and inserted the catheter (containing the guide wire) into the vein. Once all that was in I watched a little apprehensively as she pushed (and kept pushing) this *long* purple tube into my arm. I couldn't feel anything, though the IV nurse said to let her know if I feel anything funny in my neck, since they catheter can sometimes make a wrong turn and go up into your head. Eww!

The other cool device they used was a large magnetic sensor that sits on your chest and can detect where the guide wire and catheter are in your chest. So a few seconds after she was threading it along, the guide wire popped up on the screen and she could see exactly how close to the heart it was and what depth it was underneath the skin. When it was all done, she pulled out the guide wire from inside the catheter and taped everything up. Then it was off for a chest X-ray to make sure everything was in the right place. I have a little sock to wear over it so that the end of the tube doesn't dangle around and get caught up on something.

Finally, they taught Johanna how to flush the line with saline and heparin (an anti-clotting agent) to keep the line clean so that it doesn't clot up. They let her practice on me and she did great :) If the PICC stays this comfortable, I may just leave it in since it can be used for transfusions and blood draws as well, until I get the Hickman port in a month, which is what they'll put in just before the transplant. A Hickman is similar to a PICC except that it sits right above your heart and seems to be used for more heavy-duty stuff.

It's official!

The transplant is set for November 19th. This assumes that the donor is ok with this date since we have to work around her schedule, so it *could* change between now and then. Hopefully she'll look at it as a pre-Thanksgiving vacation :)

Check-in date to the SCCA is October 22nd, and between then and the transplant I'll be put through all kinds of tests to see how well I'll respond to the chemo treatment and the transplant. For example, I'll have another bone marrow biopsy and spinal tap (turn it up to 11 baby), CT scans, pulmonary blood flow scans, x-rays, EKG tests, etc. Johanna and I are scheduled to meet with the transplant team and nutritionists during this time, and we'll be sent to a bunch of classes to learn how to keep me from getting sick after I'm sent home from the transplant (30 days later), since there will be food to avoid, counters to bleach and public places to stay away from. From what I understand I'll have the immune system of a baby and will have to get re-immunized to everything. Or, in more geeky terms, it will be like they wiped me clean and installed Windows XP in me, and while we're installing all the service pack and updates we'll be trying to avoid crazy viruses. Seems so surreal, but we're ready for it.

Oh, my sister's friend Trevor wrote this very touching blog post about his concern for me:

...they've already found a donor for Steve. A woman, no less! Which makes me feel a little funny. All I can think about now is how those dainty little stem cells will be settling in there, getting comfortable, redecorating Steve's marrow and whatnot. Probably installing some frilly lace curtains, and putting a ton of unnecessary, superfluous pillows on all the beds. Feh.

So, I want you people to help me. You people out in Seattle: keep an eye on Steve. Make sure he doesn't get ... soft after the transplant. Bring him guy things to enjoy while he's in the hospital. Give him a friendly punch in the arm, once he's engrafted and has enough platelets. And Steve, the next time I'm in Seattle, let's go watch some football at a sports bar somewhere. We can pound some brewskis (out of cans, not bottles), and eat wings, and do some arm-wrestling during the commercials, and maybe later watch a Larry the Cable Guy DVD.

So yeah my Seattle homies, do what he says.

No induction therapy after all

Quick update: turns out we won’t be doing induction therapy after all. The biopsy results from Monday show that my marrow is in much better shape than last time (9% blasts instead of 35%), which means the SCCA can take me for a transplant the way I am. This is good news, since induction therapy is pretty heavy stuff so the less of it the better, and it also means less time in the hospital and thus quicker progress towards the transplant.

The other news is that the SCCA (Seattle Cancer Care Alliance) has tentatively scheduled October 20th as my admittance date for transplant. This is super good news, since we finally have a rough idea of the transplant schedule. So this would put the actual transplant itself at around November 10th.

So the new schedule is:

• another round of chemo
  
• 2 weeks of prep/tests at SCCA (starting Oct 20)
  
• 3-4 days of intense chemo/radiation
  
• 1-2 days of rest
  
• transplant!
  
• 4 weeks in-hospital recovery
  
• 1-2 months at home recovery

In other news, my platelets are at 15 and my ANC (absolute neutrophil count) is at 0.1. Ouch. An ANC value less than 0.5 means that you have problems fighting your own bacteria. 2.0 and above is normal. Time to stay away from people for a few days, especially now that everyone is getting a cold. Hopefully my platelets will hang in there so that I can go without another transfusion.

Exciting stuff.

Might be packing my bags for the hospital

Well, tomorrow morning I may be packing my bags for the hospital. The plan is to start me on induction therapy, which is a high-dose chemotherapy used to put MDS and leukemia into remission. The actual treatments will last 7 to 10 days and supposedly require hospitalization for up to a month. Ugh. This is because most of the normal marrow cells as well as the cancer cells will get destroyed by the treatment so there will be constant monitoring happening and the likelihood of more transfusions. Not all of the cancer cells get wiped out, so the disease will usually return in several months. But the goal of the induction therapy is to put the disease into remission as much as possible before the transplant, which we're guessing will happen in about 10 weeks.

Oh, and the bone marrow biopsy on Monday went fine. I was a little nauseous again after it was over so Shawn and I spent most of the day chilling out. But during the biopsy I was happily sedated, and Dr. Goldberg sang more songs! He sang "With a little help from my friends" by the Beatles and "Truckin'" by the Grateful Dead. I don't know if he sings to help relax his patients, or if he sings to make himself more relaxed, or if he sings because he is generally having a good time sticking a big needle in my ass. I think the latter. But it definitely makes the whole thing a lot more entertaining :)

Oh, and my friend Josh at work wants me to call it a "camaro transplant" instead of "marrow transplant". I like the sound of "bitchin' camaro transplant" even more :)

Shawn visits Seattle

My best friend from high school came to visit all the way from Germany this weekend. I hadn't seen Shawn since 1995, so we had a lot to catch up on :)

Here are a few things we did around Seattle: