From Bright Eyes, “We are Nowhere, and it’s now.”
In our wheels that spin around
As we move over the ground
And all day it seems we’ve been
Between the past and future town
We are nowhere, and it’s now
We are nowhere, and it’s now
You took a ten-minute dream in the
While the world it was flying by
I haven’t been gone very long
But it feels like a lifetime.
In my pre-diagnosis life I was blissfully ignorant of a great number of things:
- Blissfully ignorant of the nature of cancer itself.
- Of the differences in stages. And just how different survivability levels can vary based on so many different factors.
- How the length of survival for terminal patients can vary based on so many different factors.
- How primitive diagnosis tools are when it comes to getting the right answer to apply the right treatments.
- How to react when someone you care about is hit with tragedy: I realize how often my default approach was avoidance because I didn’t know what to say or do. I have since learned how that kind of reaction feels to the person on the other side of things, and that awareness helps me to be more understanding of others who do the same.
And what is the biggest things that I have discovered about human nature over the last year? Just how often we tend to speak about the past and the future. Especially the future.
My kids tell me yesterday that they want to still do camp next summer, even though I will not be working. All I can respond with is, “Let’s see how things are as we get closer to next summer and go from there.” What I am not saying (although they are old enough to read between the lines) is that I don’t know for sure whether I will be here next summer, and if I am how healthy I will be.
My husband has noticably curbed any discussion of the future because he knows how much it hurts me. He is the only one. It’s just too habitual of others. The future is so much a part of people’s lives, that they can’t NOT talk about it. For my part, the sting is getting duller. For the sake of full disclosure, however, I will have to admit that I still haven’t let go of irrational resentment of older people. Especially those who complain about minor annoyances not realizing how incredibly blessed to still be here at all. Perhaps that will start to get duller as well.
In the world of today, I went in for a PET scan last Friday. Given my tumor marker spike just prior to and shortly after re-starting chemo, I wasn’t expecting positive results. I read it online with my husband at my shoulder for support in case it was really bad.
Short, vague, and to the point, it was like a Cliffs Notes summary of the highly anticipated suspense novel “What Happened in My Body During My Break From Chemo Recovering from Surgery.”
While the detail was sorely lacking, I was at least able to tell that at a minimum, my largest liver met grew from 3 to 4 cm in the past six weeks, alongside the 5 cm ovarian met growth from 7 cm to 12 cm.
Thisis is not exactly good news. However, for me the biggest headline was all of the other potential axes that could have fallen in that report but didn’t.
I am focused on the fact that other than the obviously not great factors above, there were a few silver linings here. There was no evidence of dramatic spread of metastasis through my peritoneam (abdominal cavity) or elsewhere in my body.
This was the third PET scan since diagnosis, and the first that didn’t mention “high FDG uptake” in my small bowel loops or near my rectal stump. Although the area around my ostomy, previously mentioned did still glow a little this time), the absence of the statements even dared to give me a small sliver of hope. This means that other than the travesty of my ovarian tumor growing like gangbusters, the HIPEC surgery did some good after all.
And that, along with my overall reduction in liver mets (17 removed in surgery) means that my gamble had some payoff to go along with the price I paid. If my ovaries had been removed like they should have it would have been a clear net positive.
In summary, there is nothing here so terrible that I am being told to pack it up and make final arrangements. For that I am grateful.
So now we have a baseline, as I continue forward into my next line of treatment and focus on the GINORMOUS next hurtle: Is my new line of chemo going to work? If it doesn’t, that will be very bad news. I have no second-line standard of treatment options, so standard of care would dictate that I go to end of line treatment intended to only slow growth and perhaps buy a few more months. This means that my real next step after this will be trying to get into clinical trials, before I am too weak to participate.
We will have a better picture in two months. Four more chemos. Enough to give it a chance to kick in and work, and to find out whether I can stave off of that next step for a while.
Of course, even as I type that, I know better. I know that there will be tumor marker readings to give me some clues. I know that if it isn’t working, my ovarian tumor could keep growing and cause more problems. I know that at any time, my two month reprieve could change direction.
I’ve added three new specialists to my team locally to address the ovary met- a gynaecologic surgeon, a urologist and a radiologist. They will attempt to work some magic next Tuesday to try to replace the nephrostomy tube with a stent and perhaps drain some fluid from the tumor for palliative reasons.
So there is definitely a lot still to happen. As I have learned, the picture can change at y moment. We never know whether the road ahead will stay straight or take a sharp turn.
As I alluded to in my last post, I am- in measures- beginning to accept the reality of my mortality. I have for now done everything that I can do. I also know that what is going to happen is going to happen. I am back to driving in fog and I need to make peace with the fact that I can hit a tree at any time. I am getting closer to that peace. At least I think I am.
In the meantime, I am continuing to try to savor today as much as I can, so that they do not become the 10-minute dream in the passengers seat alluded to in the opening lyrics from the Bright Eyes classic.
This is my story’s ending. I know that I can’t change it. But I have needed time.
I have needed time to absorb the shock.
I have needed time to grieve.
I have needed time to discover, in my own way, how to navigate this final chapter.
I have needed time to process what it means for MY story.
And finally, I have needed time to decide how I write my final ending.
This is a process, and may change as the circumstances change, but I suspect that I will be writing about this topic a lot as we move forward.
Tomorrow is uncertain, but I still have today. And my todays have been getting better since I started to shift my focus. I am absorbing myself into the moments. Playing poker at the casino. Singing along to a song with a friend at a Sarah Mchlachlin concert while my daughter sways with me. Board game night with friends when I am feeling up to it.
I will continue to advocate for as many more tomorrows as I can squeeze. But I realize that today is still very good. And when the indeterminate axes decide to fall? I can only hope that I will be strong enough to face them, and to have the best concluding paragraphs that I can still lift my pen to write.