If You Had a Short Time Left to Live

What would you do if you only had a short time left to live? This actually happened to me, except I survived.  What I thought I would do and what I did, in fact, do were not the same things.

My extended brush with death came about when I had congestive heart failure, brought on by treatment for thyroid cancer. Since I was not really a candidate for congestive heart failure, and hadn’t even heard of it, by the time I sought medical treatment I was, as the doctor said, gravely ill. Hearts have an ejection fraction, which is a measurement of how well they pump out blood. A normal ejection fraction is between 55 and 70. When it drops down to 40 you get diagnosed and start medication. At my first doctor visit my ejection fraction was 7. It rarely happens that someone with a heart as sick as mine was survives, but I did.

There was no sudden healing. I endured a year of simply not dying that day. I expected it at any moment. Everything I did felt like the last time. There was one day when I came awfully close to death. I was in the car with my family and my heart went into an odd rhythm unlike common pvc palpitations. I felt the blood drain out of my head and started to quietly black out. Then it started beating normally again. My heart had fibrillated. It was terrifying.

This is what I would have thought I would do when faced with my own death, and what I actually did.

1     Upon hearing a diagnosis of probable imminent death I thought I would rapidly cycle through the stages of grief: denial, anger, bargaining, depression, and acceptance. Instead I skipped right past denial and didn’t have the energy to be angry. I followed all the doctor’s instructions to the letter, which I suppose could be construed as bargaining. Then for a while I was plucky: I’m going to beat this! Depression came later and was massive. It has been seven years and I still haven’t completely reached the acceptance point. After I survived I wallowed around in depression for years, then circled back to anger. Acceptance is on my to-do list – not acceptance that I was going to die, since I didn’t, but acceptance that such a thing could ever have happened to me. I protest! I’m against it! As for denial, which I had skipped in the first place, my husband has that one covered.

2    Emotional reactions aside, it seems like the first thing you would do is get your affairs in order. The reality is that if you’re so sick you’re about to die you just don’t have it in you to worry about consolidating bank accounts, updating wills, and so forth. The life lesson here is to keep your affairs in order all the time. Also remember that eventually someone else is going to go through all your drawers.

3    Wouldn’t your imminent death be a great time to say all those things to people you’d been needing to say? Some things, yes. I think I told my family a billion times how much I love them, which wasn’t really news. But when my heart was barely beating the last thing I needed to be doing was to call up an old boyfriend or someone else from my past and hash things out or say what they’d meant to me. If you’re too chicken to say something now you’re not going to be less chicken when you’re at death’s door. Let’s be realistic.

4    About that bucket list – do it now. Sick people don’t tick off items on the list. After I was doing better I did start work on the novel I always meant to write, and I’m still working on it.

5   They say your life flashes before your eyes, and I have to agree with that, except for the flashing part. Since I seemed to be dying a slow death my life spun out for me slowly. Many memories came back to me of who I was at all the stages of my life.

What else?

I condensed my life down to just my family. I decided I wasn’t going to spend my remaining time yelling at my kids about homework and videogames, but to make sure they knew how much I loved them. Nor was I going to spend it worrying about my diet, other than the low-sodium diet the doctor had prescribed. Cleaning house? I mostly couldn’t, so we hired cleaners and said that was clean enough.

I reevaluated my religion, throwing out much of the religion and keeping Jesus. I saw through a lot of big talkers. I saw who really cared about me. I saw plain as day that God had His hand on me. I stopped letting people waste my time with immature lessons on spirituality.

I played a lot of World of Warcraft. If you are inclined to scoff, watch this TED talk, which talks about how playing games increases your resilience and decreases depression: http://www.ted.com/talks/jane_mcgonigal_the_game_that_can_give_you_10_extra_years_of_life.html I hadn’t seen the TED talk when I started, but my kids were playing WoW and I was doing lots of things with them. I found that the social aspect, the reward system, etc., of games were keeping me feeling strong and positive.

What do you think you would do if you knew you had a short time left to live?

When "How Are You?" is a Trick Question

When people ask each other how they are there are only a few categories of answers that fit sufficiently into the socially accepted norm well enough to leave the questioner feeling as though the social contract has been satisfactorily fulfilled. The categories, from what I can tell, are these:

1. Fine, thank you. You?
2. Fantastic! (usually this person works in sales)
3. Pretty good, but (insert modifier common to mankind, such as fatigue, which can lead to further conversation of the commiserating and weakly bonding sort).
4. (Sharing current, actual, dramatic news, such as an auto accident).

Anybody stepping outside the bounds of these categories risks being shown an odd facial expression. Horrors! And yet in our busy lives when so much of our human interaction consists of little more than the polite question and the categorically correct answer it can easily come to pass that most of the people we interact with have no idea what is actually going on with us.

These days when people ask me how I am I have a disconcerting tendency to answer in a way that does not fit with one of the accepted categories. I have different categories, which depend on when the last time was that I was at the doctor and what the latest test result was. My categories are:

a. Fine! I think.

b. (gazing off into space with an odd expression) How are you?

c. (vague, undifferentiated arm waving) I should know more next week.

d. (dramatic shrug and strangled laugh) (description of some new symptom)

As you can imagine, I get a lot of odd looks in response, if not outright fleeing. But the problem is, I have cancer and a damaged heart, and “fine” is not really an honest answer. Oh sure, we all lie to each other all the time. But if I just go around lying then I create two problems. First, the caring people don’t really like to be lied to. They want to know what’s up. And second, life is a very lonely experience when nobody has the slightest idea what your life is like.

These are the facts of my health, which I am going to say succinctly to get it all over with. I promise not to turn into the whining old auntie who nobody wants to visit, and go into a long list of complaints, but there are a lot of people who don’t know what happened and who would like to know and perhaps even feel bad that I didn’t tell them, as though I didn’t care enough about them to tell them.

Several years ago during a routine physical my doctor found a lump on my thyroid gland which was tested and found to be cancerous (http://www.endocrineweb.com/capap.html). There were no symptoms. It is unknown what caused it. The gland was removed and I was given radiation treatment. A year later I was scanned and more cancer was discovered in my neck. I was given a huge amount of radiation. During the second treatment a whole bunch of damage was done to various other parts of me, much of which is under control, but the worst part was that my heart was severely damaged (https://health.google.com/health/ref/Dilated+cardiomyopathy). When this was diagnosed it was functioning at 7% (ejection fraction).

Fast forward through all sorts of weird stuff like losing all sense of taste for a while, damaged salivary and tear glands, new allergies, etc. (kicking each other under the table – sorry Auntie but we have to go, and um, walk the cat) My current status is that I am continually being monitored for thyroid cancer, and I have a heart that is a “mass of scar tissue” in the words of my cardiologist. I generally feel pretty good except my stamina is poor. I go for 3-4 mile walks to try to stay as fit as possible. I am unable to go to high altitudes because I can’t breathe well enough if the air is thin. Goodbye, mountains!

This is what it’s like living with cancer: last spring I had just gotten adjusted to the fact that I can’t go into the mountains anymore because of my heart, and had put the cancer out of my mind, when I went to a routine appointment with the cancer doctor. He found a lump on my neck at the site of the previous cancer. I then spent the entire summer having test after test trying to figure out what that lump is. Some of the tests seemed to indicate it was just a normal lymph node, and some tests were inconclusive. I never felt like I could make any plans because I didn’t know if some test was going to come back positive for cancer and I was going to have to have surgery, radiation, and all that again. The lump is still there but the latest test indicates it is almost certainly just a lymph node. So all summer it was present in my mind: did my cancer come back? Am I okay? I ran this train of thought past my internist because I don’t want to be paranoid. I said, is every swollen lymph node, every cough, every mysterious pain going to make doctors test me every which way for cancer again? Can’t I ever just relax about this? And he said, that’s just how it is when you have cancer.

This is what it’s like living with heart disease: you go to a doctor for anything, anything at all, and all they want to talk about is your heart. They spend a lot of time with the stethoscope. You’re like, hey, I sprained my ankle, or I cut my finger, and they’re listening to your heart.

The two biggest killers of women in the US are cancer and heart disease and I have them both, and neither of them was because I didn’t eat right or exercise enough or any of those things everyone is trying to do to increase longevity. But just watch, I will probably die from something completely different. That will make the best story!