The post I never thought I’d write
Most of you reading this will know I have very, very good news to share. Unbelievable news, actually. Its not shocking, or overtly miraculous, like those people that go in for scans and the doctors tell them things like there is no trace of them ever having HAD cancer, nothing like that. But for me, a miracle all the same, and the best news I have heard in over two years.
Just a recap for those of you who’ve been wondering what test results we’ve been worried about… my type of leukemia, CML, is caused by a genetic problem. Not a birth defect, but a chromosome change that occurs sometime in life, usually due to radiation exposure. We don’t know why that change happened to me, but to people with CML, the tips of two or three chromosomes, break off and rearrange themselves, forming a “new” chromosome that the scientific community calls the philadelphia chromosome. This chromosome’s entire goal is to reproduce ridiculous amounts of white blood cells, taxing the spleen, liver and of course, crowding my blood stream to the point that the other types of blood cells have no room and begin to die off… thus, leukemia.
The year I was born, a doctor named Brian Druker, then newly graduated with an interest in genetics and hematology, began to be frustrated by why CML patients had such a dismal and short illness, most dying within a year of the diagnosis and puking for most of that year. He thought that since they knew the exact chromosome makeup that caused the leukemia, they should be able to make a drug to keep it from causing the cancer. He was right, and this idea eventually developed into Gleevec, the drug I started on, that was eventually released in 2001, the week David and I got engaged, while he was working at OGI/OHSU, the organization behind much of the Gleevec drug trials.
Dr. Druker sacrificed everything else in his life while Gleevec was being developed and pushed many political and financial barriers out of the way in his quest to give CML patients a chance to live. It began to work: nearly everyone on the drug trials were living past the five year mark and THOROUGHLY living, not just confined to a bed.
It worked because Gleevec was preventing the philadelphia chromosome from working, and those of us with science backgrounds know that when you inhibit an enzyme effectively, it can completely die off. This is why many people with CML can hope to be completely cured.
We measure this “progress” every three months by taking a molecular count in my blood of the philadelphia chromosome levels. They want the result to be at least -3 or greater (lesser, really, but its a logarhythmic equation, so the greater the negative number the lesser the amount of philadelphia chromosome levels in my blood). I jumped out to -2 within the first six months of treatment. And then, I stayed there, for over a year, sometimes even going slightly backward. In July 2010 my oncologist was convinced that Gleevec was no longer working and I needed to be switched to the new 2nd generation drug called Sprycel (Dasatinib).
On July 5th, 2010, our eighth anniversary, I switched to this new drug and instantly felt a difference. First the side effects were easier to deal with, and second, I felt like I was climbing a mountain, CONSTANTLY. That reminded me of the first few weeks of treatment in January 2009. I knew it had to be making a difference. Just how much of a difference, I don’t know.
My first test results post-Sprycel weren’t terribly encouraging, but I had improved …very marginally. I asked my doctor then, so, what happens with the November test? What if its still the same? He said “you can probably live with it.” David and I laughed out loud and asked if he meant that literally. He laughed with us, and said, “yeah, I guess that’s the point.”
November came and went in a flurry of pre-Christmas and school activities, and I barely got the time to have the test taken. This past month we’ve had to change my appointment for these results several times as the labwork takes over six weeks to complete, and finally were able to go in on Tuesday, Feb 8th. I have to say, I’d not been disappointed to put the appointment off. It’s extremely nerve-wracking to sit among a roomful of cancer patients, all of you wondering if you’re getting worse or better, and if THIS will be the day you’ll find that you get only a handful of months or years left.
But in the weeks of waiting for the results, something happened that I did not expect. By the time Feb 8th came, I was no longer dreading going to the oncologist, but it had nothing to do with hoping for good news. In fact, I expected the same, or worse. The last six months on Sprycel have been incredibly personally stressful in so many areas, culminating in some decisions these past eight weeks that have radically changed our lives. The months have been so stressful that I assumed that the drug wouldn’t work and I’d be exactly where I was before.
But the stress produced different results in me. The decisions and discoveries David and I made, the changes to our marriage and family, and to what we were going to let ourselves think and feel and care about, made us both, somehow, less afraid. Inside, we know we are different. Freer. Better. Less encumbered. I wish we could have made these changes years ago.
So driving into New West Tuesday morning, David and I sat in horrible traffic and laughed ourselves silly over the tiniest things (funny, we used to argue over the tiniest things). He told me then that its always been his personal mission to make me laugh as much as possible. He tells me as long as I’m laughing that I can’t get mad at him. I’m smiling even as I write this, because just this week we had the most ridiculous conversation ever, somehow it started as an argument and in the middle of it I burst out laughing, not because of something he said or did, but because I could hear myself and I sounded absolutely INSANE. And then it was over. Ten minutes of laughing later, with tears rolling down my face, he tells me he thinks this is the healthiest he’s ever seen me. Ten years ago, I wouldn’t have done that, he says, and he’s right.
It’s ironic, but it is cancer itself that has changed me. In order to make it through each day, to not let thoughts of death and despair engulf me, to embrace whatever parts of life are left, at least inside me, I need to think about what LIFE has left, not death. And in so many situations we really have two choices: cry or laugh. I’ve learned that whenever I can, laughing is really much more productive.
So, at 10 am on Tuesday, in the middle of laughing about something inconsequential (I think maybe it was about traffic, or something normally irritating), Dr. Noble hands me my test results so I can read them myself.
I almost think that I’m still asleep, the page looks even a bit blurry. But its real. The graph has gone from a straight line to a steep drop. -2.94, it says. I look at him and ask him, where do we want it again? He says, at least -3, but 2.94 is virtually 3, so, I guess we’re there. I guess we’re THERE. I don’t say much. There’s not much to say. It’s just, enough, somehow. Dr. Noble finishes his questions and says I’m doing well and then we’re off with another prescription for Sprycel (we still hope that it goes even lower, and I always knew these little white pills would be my friends for life, since if people come off of them the disease usually comes back). And just like that, all of a sudden, the tide is turning in our battle with cancer.
In the car on the way home, David explains to me exactly what -2.94 means… its 10 to the power of -2.94, which means that there is about 1/1000th of the amount of the cancer gene in me that there was in January 2009. It’s still there, but almost… not, in a way.
It may not be a fairy-tale, but I’ll take it. It’s working. It’s WORKING. I still can’t quite believe it. I’m so used to bad news I almost don’t know what to do with good!
SO, like I said, this isn’t the big booming movie ending where I get to live the rest of my life untouched by cancer, but then, if there’s anything I’ve learned these two years, is that none of us are untouched by cancer. We each have someone we know and love who is battling this disease, some closer than others, some having a harder time than others, some much younger than others. But we all live with it, somehow, and if its not in our body, we wonder deep down if and when it might be, and what we’ll do with it if and when it gets there. I know. I was like that before I heard the word “leukemia.”
But somehow by having the beast invade my body I’ve learned that as ugly as it is, I don’t WANT to be untouched by cancer. Don’t get me wrong: this is a terrible disease that nobody should have to experience, and one that I get to experience in a better way because of so many brave people, Dr. Druker and his colleagues being some of them, who fought to make it better. But I don’t want this to be just a blip on my radar. Let this not be just a storm I endured for awhile and went right back to who I was and what I was doing before. If anything, let there be good from this. And there is, SO MUCH GOOD. I wouldn’t choose to go back. Despite the pain and the fatigue and all the limits on my life, it seems that for the first time in my life, all the doors I really cared about are open, and I want to run through.
So, do I still have cancer? Yes. But the drugs, to this point, are succeeding in prolonging my life. And that, to me, is a miracle. I told my family doctor at the beginning that I was open to whatever miracle God would provide – whether mysterious and without explanation, or concrete and based on treatment. I am getting the latter, so far, the slower, less exciting road, but very very satisfying. Will I still take pills every day? Yes. Will I still get tired and sore and water-logged and so many other things? Yes. But maybe I need those things. They say that when a miracle happens for us, we might be relieved, we might REMEMBER for all of two weeks before we hit “reset” on our thinking and go back to BEFORE. My miracle gives this extra layer of effect, keeping the REMEMBER on constantly. If I need to take chemo every day to remember all that’s been done for me, then hey, bring it on.
One thing I remember every morning as I take my drugs is how many of you care and pray and ask about us, and in so doing, how you share our journey with us. We’re so, so grateful for you. You share the difficult things with us, and today, I’m so excited to let you share something so encouraging. God did something huge for me. He’s still doing it. But I hope He’s done, and continues to do, something huge for you too, as you walk with us through this, something that makes you profoundly different too.
And if that happens, well, this won’t be for nothing.
With joyful, tear-filled hearts… we just want to say, thank you. We love you. We could not have done any of this without you.
And to Him who is able to do immeasurably more than all we could ask or imagine… to Him be the glory… thanks… and honor.