To all you wonderful, caring people,
Cancer warriors, much like Marines, have a slogan to live by. Our slogan is Semper Gumby which roughly translates to “You’d better be flexible. In fact, be prepared to be twisted around in every way possible.” My treatment start date, for instance, has been moved up from August 29th to August 22nd. Why? Well, I very much wanted to participate in an ongoing clinical trial to determine the effectiveness Vorinostat (SAHA) in treating patients with my form of cancer, glioblastoma multiforme. After negotiating with the folks organizing the trial, my doctors were able to come up with a compromise. I would get to add Vorinostat to my treatment if I were willing to start treatment a week earlier. It actually wasn’t much of a compromise on my part. Fact is, I’m raring to go. It suits me fine that I’m starting treatment next week instead of waiting for two weeks.
The date change is the only bit of ‘business’ I’ve got to report, but I would like to share something else — something that’s been weighing heavily on my heart for the past few days. Late last Wednesday night, while I ought to have been sleeping, I became overcome with a terrible sadness. I began to cry and my crying must have been pretty noisy because I woke Paul up out of a dead sleep. Naturally, he wanted to know what was going on with me but I wasn’t anywhere near ready to discuss it. I’ve pretty much kept it all to myself while I let the matter percolate. At this point I’m finally ready (I hope) to discuss it. What I have to say might disturb you — so, if you’re allergic to tear-jerking stories, you might want to stop reading here.
Wednesday was the night that it finally dawned on me that I’m not the only victim of this brain cancer business. The surprising diagnosis, and the major lifestyle changes, and the plans for invasive treatment all coming together so quickly had put me in a state of shock. But now the shock has waned sufficiently for me to be able to look past my own suffering and take note of what all of this is doing to my daughter. When I finally got out of my recent funk I saw that the pain and suffering I see in my daughter is palpable. She’s hurting, and I’m the cause. Can you imagine what that does to me?
To know me is to know that the only thing I ever wanted in life was to be was a mother. Even when I was little myself, I couldn’t imagine anything better than to have a child to love and to teach. God bestowed upon me the great good fortune of seeing my choicest dream come true in July of 1991, when my beautiful, beautiful Angelique was born. You who are mothers will know what I’m talking about, and you won’t be surprised when I tell you that I have always had a ‘sixth sense’ with respect to my child. Her every glance, her every movement reports volumes about what is going on inside her — and what is going one inside her means more to me than what is going on inside me.
In many ways, my life began when Liqa entered our family. From the beginning, my husband was gracious. He said, “You’ve already done everything I need you need to do. It’s time for you to devote yourself to our daughter. We can manage on one income. There’s no need for you to go back to work until you are completely ready.” That was the greatest gift possible — being able to spend two years uninterrupted with my developing child. I put so much effort into the job of learning to become a mother! I read every book I could get my hands on. It was as if I had Penelope Leach on speed dial. Angelique was going to have the very best I could give her.
I remember the very moment when the reality of it set in for me — Paul and I had just returned home from the hospital and, after giving Liqa her first tour of the house, we sat down together on the couch. I said, “What the hell do we do now?” Paul laughed and said, “Our job, Pam, is really pretty simple. We’ve got to make certain that Angelique knows that she is loved, that she knows she matters and that she knows she belongs.” I gave him a dumb stare for a moment and then said, “Well, how the hell do we do that?”
Then we heard the buzzer. Our neighbor and pediatrician, the wonderful Dr. Ableman, was at the door. He let me in on a very important secret, “Listen to your daughter. There’s a person in there. She hasn’t learned to speak yet; but she’s always communicating. In her every sound, and in her every movement she’s telling you ‘This is who I am, and this is what I need.’ Let her be who she is, not who you think she should be.” Even to this day I think his advice. I think it has helped me let Liqa be who she truly is.
Nobody anywhere has a more loving, more precious daughter. But now, I have to witness her fear, her sadness, her anxiety — and I can’t do a single thing to ease her burden. I feel as if I’ve let her down. I feel as if I’ve let Dr. Ableman down. Liqa has never run away from life’s tough decisions; and, in my illness, her decisions have demonstrated what a really fine and truly unselfish woman she is. The basic truth is that she’s put her life on hold to give me the help I need. I never wanted it to come to that. I’d give anything to set her free, to let her enjoy being young; but I truly do need her now. Why should I be a burden at this age? That’s why I was crying Wednesday.
I have to believe that God has a plan for us — and He’s revealing it to us step by step. Everyone has been so wonderful during this hectic, horrible month; but I don’t understand why this beautiful child — why any child — has to endure this kind of pain. I know, I know, she’s technically an adult — but she will always be my baby.
In one sense, Paul signed on for this. After all, when you marry, you have to agree to that whole “sickness and health” bit so both bride and groom know what they’re getting into. Paul also knew that I wasn’t one to suffer in silence. When I was pregnant, for instance, I promised him that I’d make sure he suffered as much as I did. Paul will be quick to assure you that I kept my promise!
On the other hand, you don’t have any choice about the terms of agreement when you’re born into a family. It kills me to think of what this is doing to Angelique. Of course, as much as you try to protect your children, sometimes things are out of your control. This one is definitely out of my control.
I pray, every night, that Liqa’s going to come through this and become a more compassionate, more trusting, more appreciative human being. I want her to learn how important it is to ask for help. I want her to know that she can be supported, and that she is loved. I want her to know that when problems come along it doesn’t mean she’s asked for them and it certainly doesn’t mean she deserves them. More than anything I want her to know that life is good.
Life is good!