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Would you want to know ?

I watched a recent episode of Scrubs, where, a man found out his mother had a terminal decease. He was told that he had a 50% of developing the same condition since it was genetic. The big question facing the man was if he wanted to be tested or not. When he decided not to, the dr. questioned why not ? His explanation stuck with me..He said that once he knew, he could never go back. It's not something that you can let out of the bag, and then expect to be able to put it nicely back where it came from.

 

I guess I see the same pattern with Leukemia, and any serious condition for that matter. Even if you follow the best possible path, of receiving log 3, and possibly even to undetectable, then can you be 100% it will never rear it's ugly head again ? I was thinking about this when I had lunch recently with Tyler, Mandy, and Cynthia a week ago. Now I don't know enough about the official status after a Bone Marrow Status, but I believe that technically Tyler may be cured. But they still have him on Tasignia, which is a 3rd generation cancer drug. So even thought he technically should be 'cured', they still keep him on cancer fighting drugs. I guess there is more to it than I understand. But the CML is out of the bag, and it's something I think we'll just have to face that will be part of our lives, for a long, long time.

 

Speaking of Tyler, it had to be the highlight since our son was born, to get to see Mandy and Tyler. It was so nice to spend some quality time, and in many ways it felt like pre-cancer days. If I had to summarize it, Tyler looked great. What was most comforting was to see that his wonderful sense of humor and spirit was coming through again. He's been through hell and back to quote an old Meatloaf song, but he's on the road of recovery and I just continue to pray that this will just be something in his rearview mirror and he moves forward. And as an added bonus, he came to watch our soccer game that night. He had a big old sub with him, so I'm thinking his appetite is back !

My 4 1/2 month checkup on Gleevec

Just a quick update, I had my 4 1/2 month checkup. This is just a routine checkup, to make sure the blood work shows that things are going ok. Good news is that I'm still in Hematological remission, with a WBC of 5k. This was slightly up from last months of 4.2k, but totally normal. We don't need to worry until it approaching 10K and above, so we're looking to see it stabilize somewhere between 3-7k (most Gleevec patients run on the lower side of the normal range of 4-11k.

 

The next appointment will be June 1st, which will be the always fun BMA. Those results won't be available until 7-10 days after that.

The black Koi

A few years ago at our old house, Cynthia brought up the idea that gee, wouldn't it be nice to have a water feature in the back yard. In hindsight, I think she was talking about some type of fountain, with running water. Well, one thing led to another, and we decide to build bigger, and even add fish. Neither of us had much experience with keeping goldfish or Koi, but what the heck, can't be that hard, can it ?

 

Well, to make a long story short, we have since enlarged the original pond, then we built a new pond at the new house since we had to move the fish with us. We went from an original 300 gallon pond, to the current size of 4800 gallon, 3 pumps, 3 filters, 2 UV lights, 2 streams/waterfalls, and a bridge across it. We placed all 24,000 pounds of rock by hand (used a special mortar this time that is fish safe since we didn't want the risk of kids falling). But, I regress...

 

In this pond, we added a black Koi last summer. Having a black Koi is supposed to be good luck, and you can't have enough luck these days. Needless to say, we quickly realized that he didn't exactly stick out swimming next to his cousins, with their bright orange, red, and yellow patterns. In fact, after we got him, we stopped seeing him. And that is unusual, since although the pond is 3 1/2 feet at its deepest, we maintain clear water so you can see to the bottom.

 

Unfortunately, we've also been battling a Blue Heron for more than a year. We did lose a few fish to the bird, and if it wasn't for the fact that the bird is protected, he'd be stuffed in our living room right now. I know our neighbors won't turn us in if the bird has an 'accident' in our back yard, but it's just too darn hard to hit him with the car or the mower....I've even considered installing electrical wire across the pond hoping he will strangle himself since I've read that the number one killer of Heron is electrical wires...I believe I can make it look like a suicide.

 

So, what does this have to do with Leukemia and CML? Well, the black fish had been missing for 6-8 months now. We see Hoover of course (Since he's white and about 18 inches), and most of the smaller fish, but we had pretty much written the black one off as Heron food. But then just this past weekend, the black one was not only spotted, he was swimming around with everyone else, like he's never been gone.

 

I'm still trying to figure out how he avoided being spotted all this time ? My only guess is that he's been hiding under the stones we built as shelter/hiding places for them. But he's there, and doing quite well....I guess I realize CML is kind of like that too, you may be doing well on Gleevec and showing no signs, but it's always there, just out of sight. When you're doing well, you can almost forget that you have CML. I've tried to see if there are days that I don't think about it, but it always come back to that taking the 1 pill a day is my reminder. Since my dr. appointments are so far apart now (6 weeks seems a lifetime after going weekly), I don't have many outside reminders of my condition. And I truly believe that if it wasn't for the pill, I probably could go a day and not thing about it. Just as our black koi, he's out of sight, but there somewhere lurking.

 

I never thought 3 months after dx that I could feel that way. I'm under no illusion that this is it, there are some major milestones coming up in the next couple of years, but I have been able to start looking forward again, and not let CML be consuming me. And I haven't had any major life urges, like driving to Puerto Vallarta or joining a country band...but we'll see, there is always time....

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.

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.

2 month checkup on Gleevec

Today was my 2 month checkup. This has been the longest duration I've gone so far without any blood drawn or reviewing numbers, so I was naturally a little apprehensive. Leukemia is such a silent illness, that changes in your counts can change with no noticeable symptoms, until they get severe. This explains why some people only learn about their condition, when going to have some other injury or illness checked.

 

The good news is that I'm officially in Hematological remission  ! Given that 98% get there in a timely fashion it's not such a remarkable milestone, but it's great that it probably took me only 30 days since dx to get there. Dr P was expecting me to reach that by the 3rd month, so I'm ahead of the curve as he put it.

 

Those 90 blasts from last month’s tests were gone, Dr P said they were probably gone shortly after I left the building after my last appointment. I was slightly anemic before, but that was also back in normal range. Pretty much all my blood numbers were within range. My vitals were also great, blood pressure 120/70 and resting heart rate of 56. Lorraine the nurse said I was perfect, something I made sure to mention to Cynthia   Speaking of, Cynthia has simply been wonderful through these past 2 months. She has simply been amazing, and I can't imagine being able to get through the past 2 months without her. Her support during this period has been just the way she plays defense on the soccer field, solid as a rock. In fact, her nickname on the defense is 'the wall'.

 

Dr. P and I did discuss the next 4 months and testing, and what to expect. At my next visit in early March, we are going to conduct a  PCR test (quantitive test) that shows what percentage of cells out of a sample of 1 million, are considered Leukemia cells. This one is done on the blood, and will be our first look at how my cells are reacting to Gleevec. Our next milestone is to get to Cytogenetic remission, a test where they sample 20-30 cells, and none of them show Leukemia. After that, PCR starts telling us at a much more granular level. You'll start hearing mentions of Log - 3 in the blog, a major milestone for people with CML. That is where the PCR test shows less than 0.1% Leukemia cells for me (since my start point was 100%). 

 

At my 6 month checkup in June, we'll do another Bone Marrow Aspiration (BMA), which will show the level of Leukemia in the marrow as well. This will be another PCR test, so we’ll start seeing any progress at the lowest level possible.

 

This is all within normal treatment of CML. I think Dr. P is doing the 3 month PCR since I'm the type of person that needs data, and simply looking at the blood counts won't tell us much more going forward. I felt today was a very good discussion with Dr. P, and getting some insight into his own experience with treating CML. He's only had 1 patient out of more than 100 that he has had go to a bone marrow transplant. I've always known Tyler is special, I just never wanted him to be special in this way. Turns out that it's very seldom in CML these days to require a transplant, of course all this isn't doing anything for my friend.

 

Speaking of Tyler, all I know is what the Sunday entry had, they are just waiting for his numbers to start climbing, which will be a sign of Scott's marrow being integrated into Tyler’s body and going to work for him. I am looking forward to seeing him when it's possible, and look at him and know that he's cured of CML. As all of us, all I can do now is continue to pray and hope for that day to come as soon as possible.

 

For every 1 person that has to go through something as invasive as a transplant, there are 90 or more people, who continue to live normal lives and just have to take their pills each day. Lot of my information is from the internet, and he pointed out that it's a dangerous source since much of it is dated, and it's mostly the more serious situations that people open up to talk about. I guess he's right, if you the reader come back reading my blog in 12 months to find out that I took my pills that day, and other than a bad back from lifting Christian, I'm doing ok, I would expect you to stop reading past "today I ....".

 

I also played soccer again tonight, definately feeling the difference, and it's reassuring that part of my life has returned to a normal status. Now I just need to get into game shape, and shape in general, since I agreed to run the St. Patty day dash with our friends.