Poetic License

When you look back at everything in your past, both good and bad, what do you see? Do you see that life was preparing you for certain things, or do you think it was all good or bad luck? Why is it easier to believe in luck or fate as opposed to believing in a Creator? I really want to know why we’re wired this way. One thing is for certain. All of your past features you in a starring role.

You start a new relationship, secretly believing that the problems of your last relationship had to do with the other person, primarily. Or maybe you believe you just had bad “chemistry” together. You start a new job and you think, “Ah, at last I can breathe and just do good work.” You secretly think the last job was just a “bad fit”. Tell the truth. You really do think that, don’t you? Because it would be much worse to take a look in the mirror and see that you were a big part of the problem. Everybody does it. Don’t worry about it. The key is to always examine your life, your motivations, and your behavior.

I’ve been examining all of the years that led up to the cancer diagnosis, trying to find clues that something big was coming. I have some ideas. But first, let me share an anecdote from my first marriage.

Paul’s father died at age 46, rather suddenly, when he had a massive heart attack. If you look back, though, it shouldn’t have been considered sudden. He was a lifetime smoker. He was under a great deal of stress (because his wife was … a lot). And he was never good at eating right or exercising. Also, when he and the family were living in Portugal, selling vacations, he had a heart attack. I’m not sure anyone in the family ever saw it as a problem. I don’t think they believed the doctors. He went right back to his life and started living it as dangerously as before. So when he died early Saturday morning on Thanksgiving weekend 1987, it should not have been a surprise. Paul and I noticed when he greeted us upon our arrival for Thanksgiving that he looked gray.

Fast forward six or seven years later and you’ll find Paul, being diagnosed with high blood pressure. I remember him coming home with his first prescription and saying, “Now I know how I will die.”

It isn’t true. You can die driving to the grocery store. You can have an aneurysm that blows out of nowhere. You can die in your sleep with no discernible cause. As I told him then, I tell you now, “You control what you can control. All else, you have to leave it up to God or the universe or whatever you believe in.” Because control is an illusion. We’re only in control of our choices, not our fate.

I used to be so healthy, so vital! When I was in my 20s, I got into the computer industry and learned both on the job and on my own, reading everything I could get my hands on. My parents never had the money for me to go to college, and I got married at age 20, having Stephanie at age 21. But I had a strong belief in my intellect. I’d scored very high on all of the standardized tests, and many of my teachers had high hopes for me. But life turned out a little differently. Still, I was determined. It was that determination – and networking with good people – that got me my first job as a network engineer, long before there were certifications and college courses. When I grew tired of being on call, I started running a department. After my daughter was hospitalized multiple times for bipolar disorder, borderline personality disorder, and self-harm, I dialed it back further. I moved into technical writing. It has been good for me, steady, predictable. But I’m no longer caring for a sick child.

Around 1998, I started developing widespread pain. Headaches like you wouldn’t believe. Eventually I was diagnosed by a rheumatologist in Wheaton, MD, with fibromyalgia. I fought that diagnosis. I couldn’t believe that something that some people referred to as a “wastebasket diagnosis” (meaning that no one really believes in it but throws it out there when nothing else fits) could be causing such pain in my muscles, my tendons, my spine. I had gone from being able to move heavy network equipment to taking long naps on weekends and before going out anywhere. In this way, it was also very much like chronic fatigue. In 2002, I was found to have a compressed disk in my neck. Surgery decompressed it. I thought I would feel better, but I didn’t.

By 2005, I was comfortable in my tech writing job and was halfway through my undergrad degree (finally). I started working out at the gym with the family, because every doctor was telling me that I would feel better if I exercised. It was good for all of us. But my son and I have this thing with each other. We push each other to achieve more, to do more. He was the primary reason I got to be a good swimmer. He wasn’t satisfied with letting me linger, doing slow laps. He got me playing HORSE with the basketball in the pool. Pretty soon, I was diving after the ball, swimming fast to beat him to it, and just having fun. I was also working out with weights. We pushed each other there, too. Only one day, I felt a pop, followed by tingling in my neck, face, and arms. I called it quits for the day and went home and iced. Fast forward – I was diagnosed in late January with two herniated disks in my neck. Surgery followed. (And then another surgery 6 months later to remove a loose screw that had broken off at some point and was pushing into the back of my esophagus.)

Between the two surgeries, I lost my mom in the most horrific way. I had to watch her die slowly in the hospital, because two of her heart valves failed, and no surgeon would touch her. Her tissues were too friable. Her heart had extensive calcification. It could have been her lupus that was the culprit, but also her diabetes went uncontrolled for a good while. Whatever the cause, she died from it. On the way home from her funeral, I had a trans-ischemic attack (TIA, mini-stroke). My husband was driving us through Charlotte on our way home to Maryland. Our son was watching the house and the animals. I got a sudden, white-hot pain in my head, and then my left side went limp. I think I passed out in the car, because I don’t remember being taken in to the hospital. We were in a strange place at a strange hospital with strange doctors. I was there for 3 days, because their MRI machine broke. A CT had determined I didn’t have any bleeding in the brain, but they wanted to see if they could find a clot. They finally just discharged me because the machine still wasn’t working and I seemed stable and ready to go. I saw a stroke specialist at Johns Hopkins after I got home. He couldn’t tell for sure that it was a TIA versus hemiplegic migraine (which looks just like a stroke but usually doesn’t leave damage). The caution was to take aspirin and Plavix to prevent clots from forming, and to take better care of myself.

I went on Medifast, a diet that is extremely calorie-restricted and comes in packets. I was able to eat one meal a day of lean protein and low-starch vegetables. I drank lots of water. The weight dropped. After all, that’s what the doctors wanted. I was probably 210 when Mom died. By the next January, I was 150. The charts told me I needed to be 135 for my height and bone structure. My GP told me NO. He said, “You can stop losing now. If you lose any more weight, it could be dangerous for you.” He knew my whole family history. Before I really got to change anything, though, I developed a GI bleed that almost killed me. That was February 2007. I was in the ICU for 3 days and was given whole blood. I found out that I had an underlying condition that made me prone to GI bleeds. So away went the aspirin and the Plavix. From there on out, any pain had to be treated with Tylenol or narcotics. During those years, I also found out that I had Chiari malformation, which explained the headaches and the neck pain. It explained a lot more, but the surgeons at Hopkins didn’t think I was a good candidate for the decompression surgery. It might have caused more problems than it solved.

My best friend asked me once, “Is there anything you don’t have?” She was frustrated with me, because whenever she was talking about some medical procedure or other, I would say, “Oh yeah, I had that done and blah blah blah.” I knew then that I was annoying her, but it was true. During those years, I had so many medical procedures. I had lost my fear of them for the most part. That was real progress, because I once had a chance – when I was 19 – to take a job as an entry-level surgical tech at the local hospital in Humble. I turned it down. I almost ran from the place. Because I was scared of operating rooms and surgery? No. Because I was afraid of the needle. They needed a blood test to screen for infectious diseases before I could start the job. God, how many times have I looked back and said, “If only someone had knocked some sense into me!” See what I mean? Wherever you go…

But I have to believe that I went through all of that to be prepared for all of this. By the time cancer came calling, I was past all of that fear of medical procedures. I was ready to fight without terror. I mean, yes, cancer is scary. The treatment is scary – but it’s nowhere near as bad as I thought it would be. I had already been through the fire, and I was blue steel. I am blue steel.

All of this has taught me so much. My soul has settled down. I take things as they come. Do I still make mistakes? Oh you bet. But I know that I can handle anything. This is why I don’t want to move. I am happy here, in my house, near my friends, near my doctors, for now. Is it a little scary? Yes. But you know, scary can be a good thing. It can motivate you to do things differently – budget more closely, plan more logically. I feel that if my daughter were here, I would be better able to handle her problems, but she isn’t.

You have to learn to trust yourself. You have to learn to examine your life. Are you the problem? Or is the problem the way you react to things you can’t change? Is that stress over control causing you to be ill? Or is illness another thing you can’t control?

My sister told me yesterday that a friend of her best friend was just diagnosed with Stage IV breast cancer and that her doctor said there’s nothing they can do. She’s 80 years old but still vital. Her doctor is a country GP. I gave my sister some of the best advice I could think of. When you come to that place of a dire diagnosis, you have a clear choice – choose to live or choose to die. For me, it was simple. It’s not simple for everyone, but it should start with a doctor that gives you hope (or at least refers you to someone who knows more). I hope that the advice I passed on will help get her to a specialist. She’s only about an hour-and-a-half from MD Anderson Medical Center, where they have some of the best cancer specialists in the country. I know women who are living with Stage IV breast cancer and have been for years. Why let something win if you have options?

After everything that has happened, I’ve learned so much. Part of me thinks that I’m ready to find love again. I feel like I would be a better partner now. I think my husband and I were good together for a very long time. But I think I have suffered from the malady of perfectionism in seeking another life partner. I expect as much of other people as I do of myself. That’s bad, because I am a very driven person. Not everyone is that way. Or maybe they are but are driven toward other things like extreme exercise or extreme binge-watching. You do have to find a partner who fits with the way you see yourself and your life. If you love Manhattan, don’t marry a farmer. If you’re into long walks on the beach, don’t marry someone who loves the desert. Understand yourself before you try to understand or make a life with someone else.

Someday, I’ll get there again. For now, I feel content in my life and content with myself. By the fall, I’ll be done with all treatment. What’s next? What has all of this prepared me for?

Peace and happy Sunday, Jude