Moving Forward after Two Steps Back

Sometimes I think this cycle never ends
We slide from top to bottom and we turn and climb again
And it seems by the time that I have figured what it’s worth
The squeaking of our skin against the steel has gotten worse
But if I move my place in line I’ll lose
And I have waited, the anticipation’s got me glued

I am waiting for something to go wrong

I am waiting for familiar resolve

And it’s strange/ They are basically the same

So I don’t ask names any more.
Death Cab for Cutie, “Expo 86”
Disclaimer: For those paying attention, yes, I know that I’ve already used this quote, but it seemed especially appropriate for today’s topic. Bear with me.

 

In my last entry I spoke about sunshine with asterisks. Scratch that. It was just another mirage. Another beacon of false hope on this ship of mine. I knew they were coming, but I fell for this one any way. How very foolish and very human of me. And so we are left with just some more dark clouds, perhaps with a few silver linings hiding at the edges.

 

I read the results of last week’s MRIs in a Target parking lot, knowing that my daughter’s bus would be arriving back home again, and wanting to get my processing accomplished in private:
1) Tales of a cancer-free liver in the previous scan were exaggerated. MRI found 6-8 lesions left over, two of them in the 1-3 cm range,
2) Ovarian mass is not likely fluid or abscess, but more likely a 7cm metastatic or a non-malignant tumor
3) No metastasis in my spine, but I do have a disc protrusion, which presumably has been causing my back pain.

 

So there we have it. Two giant steps back, just when I thought we were moving forward. How do I do this again? Answer: I just do. I do because I don’t have a choice. I do because the alternative is death, and I intend to fight that off as long as I can.

 

I feel a bit like Sisyphus moving a boulder uphill. Go back to chemo, hope to kill it with chemo. Make a little progress, get a little hope, wait for the next setback to roll you back downhill again.

 

Eventually that boulder will become so heavy it will fall back and roll me over completely. That day will come, but that day isn’t today.

 

(Cue scene from Game of Thrones)

 

I started the day yesterday anxious. I think that my spidey senses were going off again. I’ve been cramping, and bleeding for a while now, but the last time I brought it up it was explained away as early menopause, brought on by chemo.  I think that I knew that the ovarian cyst was going to be a cancerous tumor.  I suppose I don’t technically know that yet, but I know.

 

I posted a poll in my HIPEC Facebook groups, and nearly all responders indicated that they had their ovaries and/or uterus removed either prior to or during HIPEC surgery. So, why weren’t mine removed?  And how could he NOT have seen a 7cm tumor when he had me open?

 

Direct quote from Colon surgeon, “While I am in there, I will look at your ovaries and uterus, and if I see anything suspicious, they are coming out.”

I was genuinely surprised by the news of the liver mets. How could he miss 6-8 tumors, one of which measured 1cm by 3 cm?

Direct quote from Liver surgeon, post-op: “We removed everything that we could see, both by the naked eye and with imaging.”

Remember my pep talk in prior entries about letting go and learning to trust doctors? Yeah, I’m pretty much done with that.

To be clear, I don’t think that any of these doctors are outwardly malicious. What I do believe is that they all have too many patients. And none of them take the time and effort to study your whole case, or remember prior discussions. They make decisions sometimes based on personal reasons and not always based upon what is going to give that patient the best shot at survival or a longer life. They think about maintaining hospital stats. They think about working things around their schedules and plans. They have internal biases and pre-conceptions. And most of all, they make mistakes.

I’m going to ask these surgeons questions and their responses are just going to be a chorus of “we tried to get everything we could” and “we didn’t want to traumatize your body more since it was such a complicated surgery.”

And they will go on with their day as usual. They will have dinner with their spouse, enjoy their next family event and use their chunk of the six-figure surgery to go on their next trip to Hawaii. And they will never think about it again.

This is how it works with people in a position of authority. They mess up, they move on, and you get told that you should too, because it’s now in the past. The difference? One party gets to live with the consequences of those actions, or die from them. The other faces no consequences at all.

 

So no, I’m not inherently trusting doctors any more. I will just assume that they are going to make mistakes. And then I will hope. I will hope that in the end their successes will outweigh the mistakes. That they will lengthen my life more than they will shorten it.  Because, once again, I really have no choice.

 

I guess this brings me to the silver linings part:
  • My liver and peritoneum are less cancer-y than before.
  • I have no mets still to my lungs or lymph nodes.
  • My back pain appears to not be directly related to my cancer.
  • I am going back to a chemo regimen that was previously working on my liver mets (though the jury is still out on whether it will help the ones in my small intestines).

And here’s another silver lining. I am pissed off. Pissed off enough to stay involved in my treatment. Pissed off enough to stay as healthy as I can for as long as I can. My familiar resolve has come back.

So I will keep sliding and run to climb again. I will keep pushing the boulder uphill. I will move forward, knowing full well that something is bound to come and push me back again. And the only answer I have to the eventuality of it all?

Not today.

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