I played my first soccer game on Wednesday of this week, and there was a clear difference than before diagnosis. My last game in November, I could only play in 10 minute bursts, and I had shakes after the game. Now I know that the blood cell count was causing my body to not adjust the core temperature as it should have. I was a little nervous going back playing since in the back of my mind there is some kind of connection with soccer/field turf/cancer, but I also needed to get over that hurdle quickly. While it’s nice to be out on the pitch competing, it's mostly about the social aspect, and soccer has played such a large parts of both Cynthia and my lives.

When our friend Andy said he needed an extra guy for his men's team, I jumped at the opportunity. While my soccer touches suffered from not having kicked the ball in 2 months, I felt much better on the field, managing to recover much more quickly after runs, and my temperature stayed great all the way through the night. Clearly the Gleevec is working, and my body has been responding well. Side effects are virtually non-existent, and besides simply reminding myself about the daily pills, CML has no physical impact on my daily life. I think emotionally it will take a little longer before I can go a day without thinking about this, but that day will come, I know it. This week has been especially hard, with Tyler's transplant on Tuesday and constantly thinking about how he's doing.

As with climbing mountains, you take a step at a time, and just keep moving forward.

PS. 2 days later and I'm still sore from the game, it's nice to feel 'normal' again

So, 2009 is starting on the right foot ! We all need Tyler's procedure to go well, besides some glowing in the dark, he'll possible be able to come home just a day or two after the transplant.  

Happy New Years everyone ! I'm super hopeful for great results this coming year. Tyler is getting some good results, which puts him on track for the transplant in the end of January. He is seriously due for some good news !

I wanted to give some info on what CML is, and how they measure progress. There are some great resources out there, just do a search on CLM and Leukemia will give you some great resources. Here is how I would best describe it.

What is Chronic Myelogenous Leukemia (CML)

CML is a type of Leukemia, which inflicts about 4800 people in the US every year. A vast majority of cases occur in middle age and older people, with only a few percent of the cases inflicting children. The average age of patients diagnosed with CML is 66 year old.

There are 3 phases of CML, with Chronic being the least advanced and often occurring without any symptoms. I've actually learned of two cases where the person didn't even suspect anything, but went into the dr. office for some other injury or symptom. Accelerated is the next phase, with Blastic being the third and most severe phase. These phases are determined by how many blast cells (immature blood cells that never mature) are found in the blood. This is measured as a percentage. Usually chronic is from 0 to 15%, I was 8% when I first went in at about 12,000 blast cells. At my last visit, I had 1200 blast cells out of 62k, so that is roughly 2%. Ideally you are at 0%.

The reason this is all occurring, is that in a vast majority of CML patients, two positions on the chromosome switch place, position 9 and 22. This is also called the Philadelphia Chromosome. Now here is where an expert would have to give you a more detailed and scientific description, but basically as I've understood it, this results in a protein being created in the body, that causes the white blood cell creation to go to town.

Therapy

As most of you know who have read either my own blog, or Tyler's blog, the first line of treatment is a drug called Gleevec. What the drug does which is different than Chemo drugs in the past, is that it binds to the protein that is created by the Philadelphia chromosome, and prevents the chain reaction of white blood cell creation. The drug itself doesn't kill any cells, thus it's a breakthrough in how they attack CML.

Remission Definitions

There are 3 types of milestones that they look for. They are :  Hematologic Remission (blood), Cytogenetic Remission (cell level), and Molecular Remission. Virtually all patients get to Hematologic Remission. The goal is to get to Cytogenetic remission, where the Philadelphia Chromosome becomes undetectable. This occurs in about half the patients using Gleevec.

Goals

This is where I find a lot of opinions, but here are some general guidelines that I've seen.

• A Hematologic response is expected within 3 months. This means that your blood level numbers return to normal within 3 months.

• The next milestone is looking for a Cytogenetic response within 6 month (reduction in leukemia cells) s, and major Cytogenetic response within 12 months (Major Cytogenetic response means that less than 35% of the cells in the bone marrow or the blood have the Philadelphia Chromosome).

• Molecular response is when even the most sensitive tests cannot detect any evidence of leukemia. I'm not really sure how important the molecular response is, if someone shows a complete Cytogenetic response (0% of the cells in the marrow/blood show the Philadelphia Chromosome).

So what does all this mean

My first goal will be to have a hematologic response by 3 months. We're already seeing major movement in the right direction after just 12 days on Gleevec (we're really curious about this upcoming blood work since it will be after 28 days on Gleevec). After that we'll be looking for a cytogenetic response. My ultimate goal of course is a molecular response, with no evidence of any leukemia in the blood or marrow, and maybe even one day they'll tell people that it's ok to go off Gleevec, once they get enough information on how the long terms responses are.

Next Dr. Appointment is this coming week, Wednesday 1/7/09.

I've thought about this phrase a lot lately, in more abstract terms than just lemons, but the old proverb is probable very representative in how you feel when you get dealt a bad hand. Although in my case, if I'm dealt lemons, I'd probably cut them up into nice wedge shapes, and put them on my Hefeweizen.  (For those of you on the East coast, Hefeweizen is an unfiltered German wheat beer....It goes nice with a little lemon wedge to give it a little zing). And it's symbolic for everyone that has to deal with cancer. Everyone's story is different, although we share the same underlying fears and hopes.

So I've been spending my time doing exactly what I want to be doing, and the snow has given us some precious time with Christian since Daycare has either been closed, or unreachable. I am still amazed to watch him discover the world, and all its wonders. This is a picture of Christian and I sledding down our street this weekend! After seeing the 3 year old neighbor girl on skis today, he told me he'd like to try skiing next year (in not so many words)..He was cheering as she was going by in perfect form!

Tyler had an interesting theory about what we have in common, and how 3 guys on the same soccer team (including one of our teammates that has been in remission for 5 years), all come down with blood cancer. I'm struggling with the dilemma, is it just that we're more aware of it since it's become a very personal story for us, or is there something more behind it. The last thing any of us would want is for any of our families, friends, or even friends of friends to ever have to go through this.

First of all I would like to thank everyone for their incredible outpouring of support and offers of help. There are prayers for Tyler and I being said in churches in Star Lake NY, in Ohio, and here in the Seattle area. I have literally drawn strength from your words of encouragement. Both Cynthia and I are eternally grateful to our families and friends.

Many have asked what they can do to help, and after talking to Mandy/Tyler/Cynthia, we all agreed that we'd really appreciate if you took time to read over the symptoms. Mandy has done a great write-up of the symptoms to look for that both Tyler and I had. The earlier they can detect this, the better your chances are. You can see her write-up by clicking here. (It will open a new window so you won't have to navigate away from this page).

They had drawn bone marrow and blood on the first visit, and this visit was the first follow up on the results and hopefully a treatment plan. We did get a nice call from Dr. Petersdorf's nurse on Friday that the blood results had come back, and the initial review showed that I was in the chronic phase. It did put us at ease a little, and we made an effort to get some regular stuff done like getting our Christmas tree and some shopping done over the weekend.

My hip was pretty sore over the weekend from where they did the Bone Marrow Aspiration. Thanks to Tyler I had elected to opt for all the drugs that they would give me, but when all that wore off I could feel it. Cynthia said that the Dr. P bent the 2nd needle in trying to get into my Bone Marrow. She calls it stubbornness on my part, I just think of it as self protection.

The visit at SCCA started with blood drawn, which will become the standard procedure. I was encouraged that my weight had gone up a few pounds, since I had been eating small but frequent meals. One of my problems is that my spleen is the size of a football, and putting pressure on the stomach so I haven't had big appetites. Knowing all this has explained a lot, so I have tried to adjust. On the first visit, they had also put me on a chemo drug, just short term to knock down my WBC numbers.

The visit with Dr. P went very well in our mind, his demeanor is very nonchalant about the whole thing. Don't get me wrong, I know he takes this very serious, but in describing the treatment and expectations, the first line of defense is pretty standard. I'll go weekly for a month and get measured, then monthly, and then every 3 months after the first 3 months. As Cynthia's mom put it, it's like pregnancy visits just in reverse. We got to discuss milestones and what we could expect. My spleen should return to normal in 3-4 weeks. He couldn't predict what my WBC will do since everyone reacts differently, and it will be almost a month until my normal immune system starts producing normal cells. He described it as if my normal production took a holiday since the leukemia was causing an over abundance of most cells. My next major milestone will come between 6 and 12 months, when they expect to not see any leukemia in the blood. This is again if I follow the happy path of the 90%. My hope is to start feeling better in a month or so, since Cynthia is now 6 months pregnant and she will need me more and more.

That night was a very nice surprise waiting for us at the door. Our wonderful neighbors Mike and Joy had prepared a complete meal, along with sides and toppings. She even knows me well enough to prepare it in such a fashion that allowed me to go for meat, cheese and toppings! It was perfect timing since we had already determined that we were too tired to cook.

WBC - 150,000 from being on the Chemo drug for a few days.

By the way, lost in all this is that my bad cholesterol was great, it was down to 106 ! I'm thinking that means steak once I feel better, something to look forward to !!

Update on Wednesday Dec 10th - Took my first dosage of Gleevec this morning and I seem to react to it fine. I'm very tired, but that is probably because I have a cold and just everything going on. Some side effects will be expected, but keeping our fingers crossed.

There was a note at the patient coordinators desk at SCCA - "Don't worry about the world ending today, it's already tomorrow in Australia"