Anxiety

[spicysashimi]

Here's something I just wrote on my blog that I thought I should post here since it is very lung cancer related, and I hope many of you may relate, at least partly.

*warning, curse words have been editied but still exist, in some metaphysical form*

Everything was honkey-dorey until I stumbled upon a blog about a 27 year-old woman with colon cancer. She was married with three kids. I read it backwards and quickly realized that she had died ... recently. Then I read the detailed day-by-day account of her time in the hospital written by her husband. It started with a debulking procedure, and they had hoped for a short 2-3 day admission, but it turned into her final visit. One thing led to another. Lots of pain. They gave her so much pain medication, it made her hallucinate, so they gave her Haldol. She was also on an Ativan drip because she was rightfully overwhelmed with anxiety. She had a catheter with a bloody-mixture as an output, she was jaundiced, she was nauseus. She was in and out of sleep.

Dying from cancer is just awful. I'd rather be hit by a truck. I hate the slow, inevitable deterioration. You can sit up and watch your body unravel, piece by piece. Even though you excrete blood, you eat through a feeding tube and your kidneys don't work anymore, you can still think and observe and realize what's going on. You can see that bag of blood in your catheter bag, you know why your aunts and uncles you don't really talk to are now suddenly in your room. Its not a peaceful death.

Anxiety about death from cancer is inversely related to the time of your diagnosis. Sure, you got that initial 'shock', but there are a lot of unanswered questions and still a lot of options. That's different than being able to look down the road and seeing where it ends. That's just scary. Terrifying isn't a strong enough word. And I feel fine. Sure, I have a little chest pain, the occasional bone pain, but other than that, I feel like a normal person and can do what everybody else does, except I have a clock that never stops ticking. I know that sometime in the near future, my cancer will metastasize at a rate or to places in my body that make my disease unmanageable. The array of anti-cancer weapons will be ineffective or unsafe for whatever reason. I will be left "alone," as a host for the cancer to destroy wondering how many more hours or minutes before I can't breathe anymore.

Humans are programmed to survive. We've built civilizations out of the abstract idea of survival, both individually and as a race. We can't accept death. We do all sorts of crazy s*&@ to try to avoid death. In the past, if you were going to die, you were sick, and it likely didn't surprise you. Now, doctors can tell you that you will die in two years, and you feel fine, and you wonder just how this is going to play out. That wondering sucks a**.

Then there's this whole bull$&*@ about how since you feel good and you know you are going to die, you should do all those things you would want to do before you die. I hate this so much. In fact, I hate it when people ask me: "is there anything you want to do? any places you want to see?" etc. This is riddled with so many problems. First of all, the practical issues - money. Although I believe all cancer patients should have the option of a lump sum of their anticipated social security payouts, it ain't reality. Incredibly, I can't even get a tax credit. We are as broke as y'all are. But even if I was an Arabian Prince, I'm not sure I would start backpacking across the Andes in this sort of last-ditch attempt to see the world before I shut off. For what? Memories are only good if you survive. This reminds of that game we would play when we were younger, "what would you do if you had 6 months to live?", a variation on the ever-popular "what would you do if you had one million dollars?" Its a cliche and it is, for the most part, meaningless. That said, there is still a little voice on my shoulder saying: "what the f%*# are you doing, convincing some punk kid to do two days of commuity service and trying to explain the uncertain collateral consequences of a disorderly conduct violation on his record? Go get a tan." I am almost at peace with this last bit. Tans are meaningless. I want as many meaningful experiences as possible - that includes working and spending time with Julia, my friends and family.

Don't tell a cancer patient that they should go on a vacation. First of all, it reminds them that they will probably die and you expect them to die. It also cheapens everything, especially for someone who really believes in his job. A court officer friend of mine confided to me: "what are you doing here? why are you in this dump? get out of here." I answered something polite. "If it was me, I would not be here," he said. But I enjoy and feel honored to help poor people at the least simply navigate the system and at the best, beat the system and restore some sense of pride or respect to their lives. Most of the time, I try to let people know I don't think they are criminals and I think they are as deserving of the same respect I would give to the most esteemed of judges. As a felon myself, I know how important that is.

This world ain't set up for people expecting to die. And so, for the meantime, I will continue to live, not expecting to die but to live to a ripe age. One of my favorite images I think about is me on a book/magazine cover, with folded arms, with some subtext about How I Survived Stage IV Lung Cancer. I will continue to imagine myself visiting my doctor ten, fifteen years from now, reminiscing about how dark we thought it was. I will continue to make plans and take vacations, not as someone who expects to die but just another schlep trying to get a tan for tan's sake.

[Kasey]

I see you on the cover of that magazine too! Don't give up that image!!!!!

Kasey

[RandyW]

I wish you many years of great htinking and writing ahead of you. Thanks for sharing. Sending prayers

[Nick C]

Good for you. I relate on a couple of levels.

First, dying now scares me. Mom's passing was relatively peacful, but it was still traumatic for me...so I get the anxiety of that...I have some for myself. So I understand that.

Also, my mother worked until 2 days before she passed...I told her retire, enjoy the fruits of your labor. She refused, she liked to work.

Finally, she said when she was diagnosed she was going to live every day like it was her first...not her last.

Good for you Spicy...live your life as if it belongs to you and the terms are yours!!! Only you can make it that way.

[teriw]

Wow, thanks for sharing that.

In the couple months after Bill was diagnosed, I was ready to quit my job, sell the house, move to England (Bill's home country) and basically have us start on early retirement. But Bill wasn't. He was ready to continue living for the long-term, albeit with a new reality following us around. I quickly saw the light and realized that my initial response was tantamount to calling it quits. No way. Let me just say, that was a humbling experience.

Spicy, I'm with Kasey -- I can so see that magazine cover! Or an interview on Larry King, by which time he'll be about 120 years old!

[Debi]

Aaron,

I have to admit I followed the link to your blog particularly because I wanted to read it with the curse words...

The vacation thing got to me particularly the thing about the money. My romantic mind (the one that also thinks living out in the country and sitting on a front porch swing would be great until I visit someone there and have to leave because I can't stand the damn bugs and things are howling in the distance) actually thinks that I should be traveling and stuff, while I am okay, because God knows if this is coming back. I remember when I first was diagnosed, I thought how great it would be to take my daughter and her 5 kids and my son and my mother, sister, etc on a cruise. Then reality set in - I would go out of my freakin mind stuck on a boat with my family for more than like a day and a half- just because I was diagnosed with lung cancer didn't automatically qualify me as a saint. And then you are so right about the money, plus the fact that I need to have a job to pay my bills, so I can't exactly take all this time off to jet around the globe. And I really don't want to - like you, I just want to live my own life.

Anyway, sorry for rambling - just wanted to tell you I appreciated your post and will look for you on that magazine cover in the future.

[Ry]

I had forgotten that after our doctor gave us the "get your affairs in order" talk he went on to say go do whatever you've always wanted to do. "If you only had two weeks to live what would you do?" When we left I asked John if there was something he wanted to do or somewhere he wanted to go and he answered "home, I just want to be home."

Spicy, a very wise woman on this site once told me that she felt we would see the cure for lung cancer in our lifetime. You may be on that cover yet.

[ursol]

Aaron,

I think alot of people at work wonder why I keep working. If I don't work then I will be admitting I'm not going to make it. Going to work every day or as often as I can makes me feel normal. I also need the money as we have alot of bills to pay with three kids, a doberman, two cars and a house. I'm not running off for a vacation because I never feel well enough for a vacation.

If I had plenty of money and had no worries in the world I could however see myself on the porch in a rocking chair at my rented beach house like in the movie "beaches" when it is my time to go.

Lilly