I’ve decided to write a post which I would have titled, “Contemplating Dying”, except I don’t want to panic anyone. No, my cancer has not metastasized (that we’ve been able to tell so far). I’m fine, you’re fine, we’re all fine – but we’re all going to die, some sooner than later, and most of us don’t know how to talk about it.
If you’re one of the majority of people who don’t want to contemplate dying, then skip this post. There’s no huge piece of news that you would miss otherwise.
Why Talk About It?
I’ve been deliberately contemplating death for about a year now, and it’s been an extremely valuable experience for me. No, it has not caused depression. The opposite – all these van trips – even the purchase of our house in Tucson – all these fun things we’ve been doing are directly because I’ve been talking and thinking about death.
Facing the idea of dying, head-on, with courage, has been empowering and freeing and clarifying to an amazing extent. If you’re feeling led to think and talk about death, it may be very useful for you. And if you have a friend or family member who starts talking about death, don’t automatically shut them down. It can be a very valuable process.
Of course, depending on the situation, it may be important to bring in a health professional, particularly if someone is very upset, afraid or despondent. And I do have a therapist. But thinking about death can be natural, normal, and useful, particularly for older people, and people who are impacted by difficult diseases like cancer.
I’m currently considered a “cancer survivor” which of course is true. I have, thus far, survived. Anyone who has ever had cancer, or currently has cancer, is considered a cancer survivor. The term does not mean you’re cured.
I am not yet dead, but my life expectancy right now is a fair amount less than the average boomer, and I’m not even a boomer, I’m Gen-X (the lost generation, the ignored generation sandwiched between the boomers and the millennials). Thus, I’m not really all that old! I feel like I ought to outlive my parents, but it turns out I might not. That does sort of annoy me. But such is life.
Most people don’t want to think about dying. It’s too scary, or sad. But some people, like me, do better when we work things through openly. So I have a therapist and I have a cancer support group, both of which are great. And I have a lot of loving friends and family, but I don’t want to burden them. I figure writing about it in my blog isn’t going to bother anyone, because if you don’t want to think about death, you don’t have to read this post. There will be more vacation pictures very soon, I promise 😉
Now I admit, there are types of thinking about dying that aren’t helpful. For example, sometimes people can get into a worry loop, or an anger loop, where they’re just thinking the same thing over and over and ramping up their emotions for no useful purpose.
But just because someone is talking about a difficult topic, does not mean they are in a negative thinking loop. It may be useful processing. Possible useful thinking may sound something like this: “How have similar situations affected other people? How may my situation affect me? Are there things I could do to mitigate those effects? Is there anything I could be doing differently that would be helpful for me or those around me?”
I had some ongoing trauma for awhile when I was young, and I learned through the many years since then, that I do better when I periodically take a look at it quite directly and learn what I can. The more I know about how others in similar situations are often affected, and the more specifics I learn about how I might have been impacted by that past trauma, the more I can make smart decisions about how to mitigate those potential impacts. For example, did the trauma impact my ability to trust others? Then maybe I can deliberately look at that, and learn to build trust.
If I don’t think about the difficult aspects of life, those experiences will still affect me but in a sneaky sort of underhanded way. If I don’t think about, and learn about, and talk about those events, I won’t understand how the impacts are affecting me and I won’t be able to do anything about the impacts. But if I think and talk about it, I can get smart about how to proactively limit any lingering effects of the original trauma.
Well, the same goes for current or future trauma. If you address it head-on, you might be able to learn to handle it well. If you ignore it – it’s still affecting you whether you like it or not – and you’re not learning how to handle it well.
If a friend or family member brings up a difficult topic like death, it’s perfectly legitimate to ask yourself whether you’re willing to listen. If you don’t want to listen, that’s fine, go ahead and change the topic. You don’t have to be a captive audience to something you don’t want to deal with or think about.
But be clear in your mind – are you are changing the topic because you don’t want to talk about it or because you don’t think someone else should be talking about it? It’s fine if you decide you don’t want to talk or listen or think about a difficult topic. Just don’t assume that your friend or family member shouldn’t be talking about something difficult.
Before you quickly push them in a more positive direction, stop and ask yourself…are you sure it’s wrong for them to be talking about something that seems negative to you? Maybe it’s useful processing time for them. Are you automatically assuming they’re going to end up too sad, and they shouldn’t be thinking that way?
50-50 Chances
After a fair amount of research, I’ve determined that the best data I can find suggests that I have a 50% chance of being cancer-free in 5 years. This data is for patients aged 60-65, and I am just now turning 55, so it isn’t quite right, but it’s as close as I’ve been able to find. It’s highly unlikely that my somewhat younger age is going to help me much. It’s not about my age; it’s all about the type and stage of my cancer.
(credit: https://www.medscape.com/answers/277496-92319/what-is-the-5-year-relapse-free-survival-rate-for-t3-or-t4-colorectal-cancer)
This data is particularly useful because it provides relapse-free data that are based on one’s T and N numbers. The “T” number indicates how advanced the tumor was when it was discovered. The “N” number means how many surrounding lymph nodes showed signs of cancer. Having cancer in even one lymph node is quite risky, because it means the cancer has started to spread.
Most data tables lump all that together, which makes the data nearly useless. It turns out the T and N numbers are absolutely crucial data. Look at the difference between relapse free rates for T3N0 at 79%, compared to T3N1 at 49%, and T3N2 at 15%!
OMG! Outcomes range from almost 80% to a breathtakingly low 15%. It’s hard to believe that most charts lump all of those together, creating an utterly meaningless number somewhere between 15% and 80%!
So all those other statistics I’ve cited in this blog in the past have been nearly meaningless because they haven’t differentiated between the various types of tumor (T) and lymph node (N) conditions. I had no idea it made such a difference!
I’m in the T3N1 category. T3 means the tumor invades through the muscularis propria into the pericolorectal tissues. N1 means the cancer was discovered in one lymph node.
The 5-year relapse-free rate for T3N1 is a middling 49%, which I have taken the liberty to round to 50%. There’s something almost kind of cool about 50% – it’s just so perfectly up in the air. 50-50; it doesn’t lean in either direction. So my mind swings back and forth, back and forth, like a perfect pendulum. Relapse-free or not relapse-free. Either one, equal chances.
So why does this matter? Well, anything else in life, if you had a 50-50 chance of something happening, you’d want to prepare for both options, right? …right? And what does that look like, preparing for a 50% chance of dying in the next few years?
To Treat or Not To Treat
Now you’re probably like, wait, Kristina, even if you do have a 50% chance of relapse over the next 5 years, that doesn’t mean you’re actually going to die of it, does it? Can’t you treat it again?
Well, yes, we could try. Will it do any good? Probably not. The effectiveness of treating metastasized (stage 4) cancer depends on the type of cancer. Some people live a nice long time in stage 4. Some people can even recover from stage 4. It depends a lot on how good the chemotherapy is for that particular type of cancer. Some types of cancers have really good treatments.
Unfortunately the types of chemo available for colon cancer are mostly old styles, that aren’t very targeted, and aren’t nearly as good as some of the newer treatments developed for some other types of cancers. Chemotherapy for colorectal cancer works basically by killing all your new, young, rapidly dividing cells. That’s very damaging to the body and not very targeted to the cancer itself. I think that’s the primary reason chemo doesn’t work as well with colon cancer as it does with some other types of cancer, some of which have more targeted types of chemotherapy available.
In my case, we’re not too worried about the chances of local reoccurrence around the area of the original tumor. The bigger concern is distant metastasis – in my liver, lungs or bones. In that case it would not be a simple tumor which could then be cut out. It would be spread all over, and the only treatment option would be chemo.
By the way, it would still be called colon cancer (or more accurately, colorectal cancer) if it shows up elsewhere such as in my liver or lungs, because it’ll still be the type of cancer that started in my colon. So if it turns up in my lungs, I would still have colorectal cancer, just spread to the lungs.
As I researched my choices and outcomes if I were to have a stage-4 relapse of colon cancer in my liver or lungs or bones, I decided that I’m not going to treat that kind of relapse. Sure, if I have a little stage 1 or 2 tumor somewhere, I’ll get that cut out. But I’ve decided not to do months or years of chemotherapy if it turns out to be metastasized. I deliberately won’t treat the cancer in that situation. And untreated metastasized cancer kills you.
Why wouldn’t I treat it, knowing that it would kill me? Don’t get me wrong – I’m not arguing against chemo. By all means, if you get a cancer diagnosis, do your chemo!
But in my specific case, if the round of chemo I did last summer did not work, and the cancer metastasizes in the next couple of years, more chemo is unlikely to do me much more good. And I’m not going to spend my last year or two on earth pumped full of chemo that can’t cure the cancer. Because that is not the way I want to die.
Last summer I did as much chemo as my doctor felt my body could handle. I couldn’t finish the chemo – I did as much as I could – at the end we were just trying to keep me out of the emergency room (in middle of a pandemic). My lymphocytes were crashing, my mental ability was crashing, I was suicidal, my intestines were not working – I was an utter basket case. We kept trying to lower the dose to a “tolerable” level but my body was crashing. By the way, when you’re talking about chemo, the term “tolerable” doesn’t mean feeling ok. It means the chemo isn’t killing you faster than the cancer is.
I went through all that because it may have made a huge difference; last summer’s chemo may have saved my life. But more chemo is unlikely to succeed.
Therefore, logically, I don’t care about mere survival-to-5-year rates, I care about actual relapse-free rates. Because if I have a reoccurrence within 5 years, I’m not going to treat it and I will die. Merely “surviving” for 5 years isn’t going to do me any good. I need to be cancer-free if I am going to live for awhile. That’s why I’m using 5-year cancer-free data rather than 5-year survival data.
So, am I cancer free? We can’t tell yet. We don’t see it yet – but then, we probably wouldn’t see it yet even if I was heading into stage 4. Colon cancer grows somewhat slowly. On average, if I do still have cancer in me, we would expect it to start showing up on my scans later this year, or sometime next year. Or even a couple of years from now. We don’t see it yet, which is great, but we just don’t know yet.
Living life in case I die
So back to my earlier question, “What does that look like, preparing for a 50% chance of dying in the next few years?”
After a lot of thinking and talking and processing it through, I decided that there isn’t really any bucket-list item that’s going to make me feel ready to die. I don’t have a project I’m desperate to finish, or a place I’ve always wanted to visit, or an activity I’ve always wanted to do.
The primary reason I want to stay alive is because I want to be there for my family. There’s not much that I could do right now, for John or the kids or anyone, that would prepare them for me to be gone. I want to still be around for when things come up later.
Once I realized that, I realized that there’s really very little I can do to prepare to die. So all I’m doing is spending as much time as I can with John and the kids, and trying to support them in small ways for as long as I can. And to live as openly and actively as possible meanwhile.
Through contemplating death, I have become more aware that I am alive.
To send Kristina a comment, email turning51bykristina@gmail.com