OK so as you might have read here, I was diagnosed with Stage 4 colon cancer at the beginning of June. Since then, I had a bit of radiation therapy and have been on chemo, which has been working very well - my main chemo doctor has put me on chemo vacation for December and possibly January, because it’s working so well and to give my body a break and let the side effects quiet down.
I went to the pulmonologist on Friday, and I got to see the most recent MRI they did and compare it with the one they did when I was first diagnosed - the tumor the size of a small potato in my right lung is pretty much gone now, just a couple spots left. The tumor markers in my blood are also really low, almost down to “normal”.
So that’s good, right? I went into this knowing that the over/under on my type of cancer is about 3 years - half the people diagnosed are dead within 3 years, half aren’t - and that I have about a 1 in 8 chance of living 5 years.
Here’s the thing - death has never scared me - when I was diagnosed I was worried about how this would affect my husband, my family, my friends but I wasn’t particularly concerned about myself. I used to not be, and then I get to be for a little while, and then I go back to not-being - no big huhu from my perspective. And yet for some reason the idea that I might actually survive this has me up all night in tears, terrified.
Part of it is the knowledge that even if the cancer goes away, there’s always a chance it will come back, and I’ll have to live with that sword of Damocles - never knowing if I’m truly free. And part of it is oh shit, I might have to worry about the long term again. And part of it (to be really honest) is that damn, I didn’t think I’d have to cope with the aging process, and now I might, and that’s hella annoying.
It’s like the very idea of hope is scary. Do you know what I mean? Have you (or someone you know) dealt with this? I’m just…lost here.
Anything you’re not prepared for is scary. If you’ve been spending all that time preparing for death, then it’s natural to be caught off-guard by life.
Your hospital probably has cancer counselors you could talk to, but I expect that what you’re going through is pretty common.
I understand what you are saying quite clearly: the idea there is a finite end coming sooner rather than later removes a large number of questions about goals, dreams and desires. Now you have to start thinking about stuff like that again, or do you? What if? Etc.
All I can suggest is that you use your situation for good, if that’s possible. Now every time you ask yourself what you should do, answer it framed with the knowledge you might not have another chance to do it. You’d be shocked how liberating the accelerator is when it’s floored.
I have a good friend who has survived colon cancer, not quite as bad as yours but darned close. In his 40’s with a happy marriage and two young children. You bet your ass he loves living every moment, and has become closer to everyone he knows because of his experience.
In short, yes it’s understandable, use it to your advantage.
I am, however, very excited for you that things are going well. I don’t have to live with it, so I can relax I lost a friend a year ago to the same thing and…well, I’d much rather have her around with the Sword than gone. But that’s me bein’ selfish.
Your story reminds me of what happened when the first anti-viral cocktails for HIV/AIDS became available. Huge groups of people who had been living their lives as if they had only a short time left suddenly were faced with the prospect of survival. David Sanford of the Wall Street Journal won the Pulitzer Prize for his article about the effect of the turnaround on his life. Incidentally, Sanford retired this year, 20 years after writing his own obituary for the paper.
I remember those times so well, friends who, when they found out they might not actually die very soon, had to deal with all those “death sentence” decisions they’d made. Crushing debt, destroyed families, ruined careers; it was wonderful and awful at the same time.
MtO - I’m glad you’re doing so well, but can imagine it changed everything. Already making peace with being gone and then all of a sudden finding out you get to stay, some mind blowing shit right there.
I might get to stay. We’ll see. Things are going well now, but I have to keep in mind that they could turn around at any time. It’s exhausting, having all these emotions!
Most of us don’t realize it, but we all have that sword hanging over us. Any month could be the month that any of us gets diagnosed with a terminal illness. Don’t make the mistake of assuming that everyone you interact with here is going to live to the ripe old age of 80. Assuming you do get declared cancer-free sometime in the near future, your odds of being diagnosed with cancer again later on are greater than mine, but that doesn’t mean my odds (or anyone else’s) are zero.
In a recent thread on personal finance I mentioned that I am saving and investing so that I die rich (at an old age) but in the back of my mind I worry that I won’t live to see that old age - in which case, shit, what a waste, I could have had/done so much more with that money before I died. I tell myself I’m exercising good financial stewardship, but that little thorn in my side bugs me all the time.
And if I do live into my 80s, like you I’m not looking forward to getting old. I’m still in my 40’s, so my biggest problems these days are myopia and hemorrhoids, but in the past five years I’ve witnessed my parents suffering badly from the aging process: dealing with things like hospitalization for Parkinson’s-related complications, severe chronic bowel incontinence, and a recent diagnosis of primary progressive aphasia (Mom will gradually lose verbal communication abilities in the coming years). I look at them and think, this is coming for me.
TL,DR: I haven’t been diagnosed with cancer, but on some level I can relate to your anxiety about the future. Despite your anxiety, I hope you can see your recent chemo progress, and your improving possibility of long-term survival, as an overall good thing.
I have a condition that makes it much more likely that I will have a stroke than the average person.
If/when that happens, I am much more afraid of living with the consequences than I am of dying from it.
While plenty of people recover quite well – they can walk, talk, work, and so on, if you’ve ever known someone who has had one, you know they’re never really the same afterwards. Often they have different emotional reactions to things than they had before and in many ways they can be different people.
I’ve spent half a century being who I am, and I don’t know how I would deal with not being that person any more … or how anyone who knows me (or has to live with me) would deal with that.
It’s also possible I could die of something else first and anything I might be worried about right now is completely off the mark.
So I do understand at least some of what you are going through.
I understand your ambivalence as much as someone can who hasn’t been through what you have. I hope you don’t mind my saying, though, that I am (cautiously but genuinely) very happy to hear this news.
After my brother had his heart failure/intubation/pneumonia/etc. and got home from the hospital, he had panic attacks and had to go back in for a while! I feel like it was his system just working out everything he had been through and going into the fight or flight for how unsettling and alarming it all was. It seems perfectly natural that you would go through this, not that that is very comforting!
Everyone in my immediate family has had cancer, and I too don’t want to face getting old alone. Sometimes I wonder, where is MY cancer?!
The past two years we have lost several family members, numerous beloved pets, and three of my bosses at work, and had a relative thrown in prison to boot. I am currently keenly aware of that sword despite having no diagnosed illnesses.
My maternal grandmother lived a long. long time, but with gradually-worsening Alzheimer’s for decades. My grandfather used to say, “All we can do is make this moment good.”
It is always this moment. Love to you and yours, Miss Maggie.
Others have posted some sage advice so the only thing I want to ask is whether your health system has a survivorship program. There’s bound to be something near you. These are the very things they deal with. I went to a couple seminars when I was asking, “What the FUCK just happened to me??” that were very helpful.
I lost a friend a year ago to the same thing and…well, I’d much rather have her around with the Sword than gone. But that’s me bein’ selfish.