I thought for an interesting change of pace, or perhaps simply as a challenge to myself, I would write this newsletter right before I go to my Dr. Day. Here is what has happened so far: I wrote the first sentence, stopped dead (if you’ll excuse the morbid play on words), and sat here feeling my stomach curling into a tight knot for approximately five minutes. Now I did it again. At this rate, I won’t have time to write it and my insides will be irretrievably damaged. What a swell idea this is!
Today is Monday, March 29, 2010. This Thursday will be my tenth official Dr. Day. I have certainly had many more days with doctors since Lloyd arrived: days spent inside large tubes, days spent with small tubes jammed inside me, days receiving information of a kind I never imagined about my own body. I’ve spent days of my life dressed in all-cotton clothing with no underwire in public without shame (I said underwire, people. Wire.) And I plan to do it again—approximately every two months.
Every two months—that is the hardest part. But then I look at people who are already stage 4, fighting for every day they get, and I realize that I am just borrowing trouble. I’m nowhere near fighting for days or months yet. No one knows what is coming in two months. I just happen to have a standing appointment.
I generally stay away from cancer sites, as I am easily upset. I’m weak, and I know it. (Mark is in charge of research because I can’t even handle reading it— I only see the bad. Also, he’s awesome at research.) I do have some cancer friends online, but I have to be in a very strong frame of mind to venture on to see them. The first couple of friends I made who had my condition are gone now. It is not easy.
At any rate, I spoke with a young girl online recently who had just been given some news about her cancer that sounded as though she might not be—to her surprise—“curable” after all. She is struggling with the concept of “living while dying,” deciding whether to pursue a degree, and simply “tolerating the mundane.” LOL! How true! I needed advice on that before I had cancer! How quickly we forget that cancer didn’t cause our problems, it only serves as a convenient whipping boy for them. She asked us for advice on how we cope, and here is what I said:
It is super hard. SUPER hard, I know. But life is not about the promise of a collection of years. It also isn't about "live each day like it is your last" (although I know some people espouse this, I find it impossible. Who would pay their bills, buy toilet paper, or clean the cat box?) There has to be a livable, happy medium in there. You will find it, and you will forget it sometimes and have bad days and moments, but you will find it again.
Here is my advice, which you can take or discard as you like--that is the beauty of advice! Take baby steps out onto this new cancer life thing. You seem pretty new to it (I am only a year and a half in myself), so you're learning that it is, in fact, still just life. Make some plans. Maybe some shorter term ones if you are more comfortable with that, or just go for the longer term ones. Why not? What the heck else are you going to do, just sit around and wait to die? That isn't living. As long as you ARE living, you might as well do it. Do what you were going to do anyway, pre-cancer showing up, for as long as you possibly can. Who knows, you might get to do it indefinitely. That is my outlook: wouldn't it totally blow if I stopped doing everything I was going to do (pre-Lloyd the brain tumor) and then I ended up living to 90? What a GD waste! I won't do that. I at least am in charge of that much.
Don't get me wrong--I am a total feel sorry for myself, lay on the floor crying girl once or twice a month, minimum, but it usually passes quickly. It happened a LOT more in the beginning. My uncertainty level is through the roof, and will likely never change. It blows.
Also: tolerating the mundane is hard. But I don't think escaping to an exotic locale would actually help any, really. I've thought about quitting my job and just hanging out, but what would I do? What meaning would I have? Sometimes there are threads about that..."if you had a million dollars, what would you do?" To me, the answers seem pretty trite. Sure, the beach is nice. But all day, every day? What would you DO? You have to have a life. You can't just sit around waiting to die, because your doctors sure as heck aren't giving you "dying" treatments--they are giving you "saving your life" treatments.
I truly wish you the best, and I hope I haven't talked your ear off. I do, honestly, know that this sucks. SU-uuuuucks. And I am really, really sorry. But you are going to be okay.
That is what I told this young girl, who may or may not be dying. Just as I may or may not be dying—as may anyone. And why am I putting it here now? Because that day, that moment that I took to write her, when I had the strength and clearness of thought to tell her exactly what I believed—what I do believe—now still exists for me to cling to.
Because right now, this week, I need it.
Love, -Kristina
*Update: Please visit the main Lloyd Newsletter page for my post-Dr. Day message, "Calm." (http://thelloydnewsletter.blogspot.com/)
5 comments:
Kriss- It's as though your feelings and thoughts of just jump on the page. The uncertainty of all this, how it changes your life and finding the medium to live in is so very poignant. Love you!
I think the advice you gave was wonderful. A friend of mine died three weeks ago at age 52 after driving 200 miles to get from one district office to the other. He got out of his car, walked toward the door, had a heart attack, and never made it inside the office. He wasn't haunted by an illness that might kill him, but neither did he have the time to think about what he might do if he never made it to 55. He left people who never knew the love he felt for them because he and his daughter were too busy in the midst of a fight where both assumed they'd always have tomorrow or next year or five or ten years for her to grow up or for him to grow wiser.
I love your quote about the foolishness of living each day as though it were your last. Indeed, I would not pay the bills, buy toilet paper, or clean the cat box! Maybe what they really mean by that silly statement is to live each day as if there were no opportunity to apologize for what you did today but thought better of down the road. That seems good advice whether or not you are wrestling with a life-threatening illness.
I echo Melissa's comments. Knowing you, and getting your newsletters does something very good for my heart. I hope it does for a long long time to come, but no matter how long, what you write has forever changed my life for the better- to know the compassion, optimism, frailty and humanity of such a warm and wonderful person who cares enough to share herself with her friends who love her is an unqualified blessing.
I think if your father had lived, he would be proud of you for handling your condition and life so well, even with emotional set backs. Your initialed to feel sorry for yourself when you need to. Life isn't a guarantee that we will all live a long full life but you have to live yours the best way you can for as long as you can. If there was guarantee your dad would still be here to hold you when you need to cry or just be held.
Thats Marks job now and I know he is doing it very well. You do what is best for your own well being and peace of mind (if there is any).Every day is a gift and having to go every two months to get checked out is a pain but necessary. We can just pray that every two months Lloyd is still a sleep and stays that way.
Thanks, Sue—that means a lot. For those who don’t know, my father died (far too young) two months before Lloyd showed up. Today is his birthday.
Happy birthday, Dad!
I just started blogging, and came across yours because you're in Baltimore where I recently moved. You are a total encouragement. I'm pressing the grand restart button on my life now, and to read your blog makes me feel like I can do it. I love the part in your post where you talk about the mundane parts of life and how people just don't get to live like it's their last day, because you're right -- nothing would ever get done. I'd spend my last moments just looking in the faces of people I love and touching them as much as I could if I had a counter on my days left on earth, but then my car might get repo'd and I'd probably be evicted from my apartment. Your blog makes me think I waste too much time worrying about things I don't need to worry about, and imagining scenarios that might/might never happen. I need to just focus on what I have in the moment, and stop worrying so much. You are quite the inspiration!
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