April and May 1998 were significant times to me. April 17 was the one year anniversary of James' diagnosis with leukemia, May 14 was his eighteenth birthday, and on May 30 he graduated from High School. The writings below are excerpted from posts I made to online groups at these times; they kind of read like diary entries.
April 17, 1998
Today is the one year anniversary of James' dx with ALL. Yesterday I visited the nurse practioner who was institutional in his dx and gave her a hug and the book "The Cure of Childhood Leukemia" -- we both blushed a bit but it felt good to trade smiles and thanks. For those who don't know, James was 16 at the time and he hadn't even been very sick; he was dx on this first trip to the doctor thanks to the correct actions of this nurse practioner. He was in remission the first time they checked, 7 days after the start of the clinical trial, which I think would be a year from a week from next Monday. He has made his whole treatment look easy, it has gone so well. I thanked his oncodoc the last time we were there -- and had emailed thanks to her on Doctor's Day and she was quite tickled about that!
I took today off work. I don't know exactly what I plan to do, but there will be freshly baked chocolate chip cookies when James gets home from school at noon! I may bribe him into filling out that last college scholarship form with a trip to the bike shop. Spoil him, that's my motto :-)
About taking the day off from work: I wanted to, then I thought -- today is the last day of labs for the semester, they really need me at work: what if so-and-so needs such-and-such? What if they blow themselves up? What about . . . Then I thought, hey, they got by without me a year ago today, so, they'll get by today. My TAs are competent young people, they can handle it. One thing this has taught me, I am not indispensable at work. Others can take over, and family comes first.
I just want everyone to know how thankful I am that my son is here with me today.
April 18, 1998
Yesterday was nice. I think what I miss most about being a cancer mom is my sense of self, my sense of just "being". I did some of that yesterday, and it felt good. I plan to do more of that in the future.
James had a morning break between classes yesterday; I had been outside getting my exercise and when I got home, he was here. I walk into his room, and he says "Get!" I hover and pull out the scholarship form, he says: "really, get out, I need to concentrate". Turns out, he had been working on the scholarship essay. FINALLY. It was due in 30 minutes. When he printed it, he actually said "here" and let me proofread it! (He never let me read his college essay.) First draft -- fantastic, I had no changes. When he left to return to school, I cautiously turned on his computer and found the "untitled" file, and copied it to my computer.
I am including the essay below, although he would *kill* me if he found out (chocolate chip cookies wouldn't help me out of *that* jam). But it is so inspiring, and revealing, I think, and written off the top of his head, so it is quite honest and really lets you know my son. It also explains why he is not very responsive to the teens with cancer that I send to him via email. His attitude is: "just deal with it". I do take argument with this attitude at times, as in, if he knows how to deal with it, he probably could help someone else too. Oh well, no one is perfect. And I am so very, very glad that he is not depressed about his cancer.
I have never been a person to set steadfast, specific goals. As time passes, events change my perspective on life and what is really important. If I set a goal, and then an experience changes my perspective, then the goal that I set becomes defunct, and is no longer worth attaining. Therefore, I now try to live by one simple goal, to make the best of what I have, and strive to attain as much knowledge and skill as possible in the time I am allotted on this earth.
Educationally, this goal allows me to become a more diverse person. I plan to study as many subjects as possible, and know them all well, so that I am seldom unable to understand the world around me. The more I know, the more fields I can explore, and the less I have to bore myself with the mindless tedium of a single specialty. In order to attain this knowledge, I will likely stay in school longer to attain a doctorate. If, however, I only get a bachelors, I plan to explore as much as possible in my chosen career field and hobbies.
I would like to enter a career that allows me to use all my talents. I enjoy thinking and designing projects, but designing something without actually building it is somewhat unappealing to me. I want to have the skills of both the innovative designer and the skilled laborer who constructs the invention. Knowing one or the other is limiting, and I want to be the best I can be. After my first year of engineering in college, I plan on finding the most difficult, diverse and rewarding field I can to pursue.
When diagnosed with leukemia, I was not exceedingly depressed, because of my single goal. I did not let it slow me down, I simply refocused my efforts to do the most of what I could, and try new things that I hadn't thought of before. This included learning aircraft design, computer programming, movies, and experimentation with graphic arts. I stopped concentrating on much of what was important to me before diagnosis, but could no longer do, and adapted to the new things that I could.
By simply striving to be the best at everything, I have superseded all other goals and made one that is always attainable, always motivating, and always rewarding. I know that doing so will give me a more fulfilling, interesting life. It will also allow me to contribute most to my community, my peers, and humankind in general.
[note from Patty, 12/98: you all can see how confident that James will not read my Web pages -- let's just see if he ever realizes that I put his essay on the Web!]
May 14, 1998
Wow, now I have an eighteen year old son. 18. Looks even older in numbers.
James is doing fantastic. A couple months into maintenance and no problems. He's made up all his missed school work and will graduate May 30. He has decided to attend the University of Colorado, Boulder, School of Engineering.
James is a unique kid, as is each and every child everywhere! He has never been in trouble at school or at home, this I guess is sort of unusual. He is always busy with his own interests. Since a young kid, he has been fascinated with the way the air moves across a wing to make it fly; now he has several flying RC objects which he has built and/or designed and built. He was always fascinated with wheels on cars, I thought he'd grow up to design race cars, but instead he turned to planes, and his interest in wheels led to mountain bikes and a general interest in all things mechanical. He glommed onto the first Mac Plus I brought home when he was six, he soon passed from games to a desire to control each and every thing a computer does, which has led him to teach himself C++ programming language, an ongoing project with him, I don't really know what he is doing on this right now. He also is fascinated by 3D rendering programs and the graphic arts. He made the coolest animated duck for a French project. He doesn't actively seek friends or sustain friendships, but he is quite friendly and talkative if approached. He has never whined about his dx with leukemia; he has never said "why me".
James has pretty much sailed through treatment. Still, we all know that chemo is not easy, and that even though ALL has a relatively good prognosis, there are no guarantees. Although I look to the future with confidence that he will live to be an old man, still . . . who knows? I spend each moment with him knowing how precious is our time together on this earth.
I am working at home today, so I can be here when he gets home from his two classes, so I can spend time with him, make him some lunch, sit outside and watch him fly things (I got him some much-needed helicopter fuel for his birthday), and make him a cake. Whatdaya think, banana cake? Cream cheese frosting? His only request was: not chocolate. I have a great banana cake recipe. And for dinner, home-made chicken chimichangas, low-fat style, use real chicken breasts.
Okay, he doesn't want a lot of bruhaha for his birthday, but I know he would appreciate one thing: run up his counter on his Web page. All you have to do is go to the page, it loads in fairly quickly, and the counter will go up a notch.
May 25, 1998
The following began as a response to a friend's question:
>We are also going through graduation in June.. Are you
as emotional about
>it as I am? Just having my first child graduate is enough heartache, but
>after the year we've been through, I didn't even know if my son would be here
>to graduate. It' s going to be sad a happy for me. They'll probably have
>tocarry me out of the place!!
Am I as emotional as you? Well, yes and no perhaps. I feel kind of emotionally drained by the past year, and not sure I can summon up more. I've felt more emotions in this short year than in the rest of my life. I'm both afraid of my emotions on grad day, anxious to have the day over, and kind of mellowed out, like, oh well, one more thing. I'll let you know how I did when it's over!
When James hit the one year mark, I sort of closed one door and opened another. I didn't even realize I had done this until it had already happened. But now, I have accepted the fact that James will go on as planned, he will graduate, go to college, and get married and have kids. So, my emotions have leveled out and are in a recovery-period from all the trauma.
But I tell you, I think that I will be the most thankful mom in the bunch at graduation. There is no way that any other mom there will know what she has *not* had to go through, but I will know. But by going through this year, I *know* that I love my son. That's what this has taught me. And he knows I love him. I am at the same time envious of the other moms because they have a son who has not had cancer, but I am also sorry for them because they have not been shown the depths of their love for their son. I love him simply because he is himself. Not for anything he has ever done or ever will do. Is there a greater gift that you can give someone?
Well, afterall, yes, I probably will be crying too. Call in the carry-out people for me too :-)