Wednesday, March 25, 2009

Recognizing Patterns

For the first couple of months on Gleevec (400 mg) I had some side effects, specifically some pressure behind the eyes, as well as some random muscle aches. It was weird to have a muscle ache in your big toe for example. But I was told that may happen.
After the first month, side effects were further apart, and less severe. Mostly they were present in the half hour after taking the pill. What I have noticed is that taking the pill after dinner lessens any side effects. Unfortunately both times I felt the worse, was after a wonderful meal prepared by my MIL that had a very rich gravy, with red wine. It was so good though that I may just live with the side effects.
Alex has turned 3 weeks old, and thank God for mothers. Cynthia's mother was here the first couple of weeks, and now my mother will be here for one more week. It's been so nice to have her here, I hope the one thing she does recognize is how normal our lives are. I guess, as normal as 2 boys under the age of 2 1/2 can be. Besides taking my pill (now down to 1-400 mg pill instead of 4-100 mg pills), there isn't much on a daily basis to report. I know I am blessed to be in this spot now, and I know this could change at any time.
Our lives are so normal, that most pressing on our minds is to get ready for Spring Outdoor co-ed soccer season. Our team has finally decided to start acting our ages, and will go over 30 for the first time. Not bad considering our average age is almost 40 that we managed to delay the inevitable. While I was hopeful that Tyler may be able to join us this season, it may still be a little while until he will grace us with his presence on the field. I think I'll know that life is normal when I watch Tyler receive the ball, do his patented move, and provide one of his sweet passes. At that moment, I will know that we got back to where we were meant to be.

Saturday, March 14, 2009

3 month checkup on Gleevec and arrival of Alexander Tyler Loland

The actual 3 month checkup happened back on March 4th, but I was waiting for some results. The plan was to get a BCR_ABL quantitive test, and I had blood taken on the 27th of Feb so that the results were in on time. Unfortunately, they weren't available on the 4 th, and eventually come to find out due to some mix up, they went to the 'other' lab, and with molecular testing it's critical to sample at the same lab each time since results are subjective. So nothing much came out of that. Our plan still remains to get a BMA (Bone Marrow Aspiration) sometime at my 6 month in June (which will then give me an quantitive result), I'm just disappointed to not have a 3 month checkpoint to go by.
The good news is that my WBC is in the low 4 thousands. Technically it's on the low end, but patients on Gleevec tend to settle in the 3-5k range. Also, my immune fighting white blood cells, were in a good range, indicating that my body is producing healthy white blood cells. From what I understand, as long as all your blood parameters are within expected ranges, Gleevec is working as expected. We did schedule more blood work on April 15th.
The most important news I have is the arrival of our 2nd boy, Alexander Tyler Loland was born on March 2nd. He is a healthy 8 pounds 2 ounces little bundle of joy. Both he and Cynthia are doing well. People will immediately connect the middle name with our good friend Tyler, but the decision was made for all the other reasons than our common battle with CML. Both Cynthia and I have known Tyler for almost 8 years now, and he and Mandy have been such important parts of our lives. I think Tyler's soccer skills alone would have made him an excellent choice, I mean, who else can pull off the move like Tyler, even when you know it's coming, it gets you :) But there are so many other reason that make Tyler an excellent role model, and I'm sure he'll teach young Alexander some of his other talents such as card counting and golf.
I think overall Alex is easier than Christian was the first 2 weeks, although I think already having an active 2 year old makes everything a little harder. We've been blessed having Cynthia's mom with us since birth, so we've had experienced help. My own mother arrives in town this coming Wednesday, so we are greatly appreciative of all the help we are getting. It will also be the first time I see my mother since diagnosis so I expect this week to be somewhat emotional.
Speaking of Tyler, he is doing well, and we're crossing our fingers that he continues the road to improvement. These past couple of weeks have been difficult in following some other's battle with CML. Trish, a friend of a friend back in upstate NY, had to go through an emergency Liver transplant. Originally they feared a reaction with Gleevec, but now from what I understand, they may suspect Wilson's disease. The good news is that she is doing well and back home. Also, a very nice women over in Duvall (also with CML) learned that besides dealing with CML, she was diagnosed with MS. And Yanni learned in the last month that her type of CML is a mutation that Gleevec unfortunately is not a good fit for. She has already gone through some rounds of Chemo since the Leukemia got into the Central Nervous System. I had lunch with her and her significant other the other week, and I hope we can make it a monthly thing. When you get to know these people, you can’t just sit and watch them on their journey, you get drawn in and become emotionally invested. I just wish there was more I could do to help.
The one thing I have learned in a short time, that CML is pretty random in who is effected, but everyone I've had contact with is someone very special. I am astonished on how people can dig down deep to fight it and keep moving forward. Both Yanni and I have summited Mt. Rainier, so our analogies are often related to mountaineering. The one thing I remember best from my trips to the top, is that I never would have made it without my rope team. You may summit, but it's the team that got you there.
So now I go another 4 more weeks until I get tested again. I made a small switch to take my pills after dinner instead of before, and that seems to make a small difference in how my stomach feels shortly after dinner. Overall, feeling good, I think the tiredness is more related to our little own arriving, than CML.