It’s 4:30 in the morning and I can’t sleep, so maybe it’s time to get some of the thoughts out of my head and down on “paper.”
After being home with what was probably the flu, I was well enough yesterday (Tuesday) to visit Isaac at the hospital and talk to at least one of the doctors myself, so I’m a little clearer in my own head now about what’s going on. (Wow, the length of that last sentence was almost worthy of PEIB himself—I’m always editing his long sentences. Is this the authorial equivalent of sympathy pains? Perhaps, but I digress…)
He was asleep when arrived, which I expected, since he was doped up for the procedure they’d done earlier in the day. He looked pale and frail, lying there. Those of you who have kids, you know how you look in on them when they’re sleeping and you look long enough to make sure they’re still breathing? I found myself doing just that. I’ve actually done that a lot over the last few months. That’s the problem with being psychic/empathic/whatever, you do stuff but you’re not always sure why. I’ve been worried, but not sure if I was projecting my own internal anxiety issues outward at him. He, of course, had been minimizing his discomfort so as not to worry me. Yes, we wrote our very own O. Henry story of the emotions. Note to others: if you’re both psychic, keeping up a brave front for the other person doesn’t work so well.
Next note to others: listen to the damn doctors. Don’t try to diagnose yourself. Diagnosis is more art form than science (one guy at our regular clinic says, “that’s why we practice medicine”); I’ve always believed that the best diagnosticians are less Sherlock Holmes and more just plain psychic. (Car mechanics, too, come to think of it.) Regular screening tests are good, but don’t ignore symptoms just because you’ve had the tests. Isaac had a colonoscopy last year, and it showed absolutely nothing, nada, just a bit of diverticulosis. Come back in five years, they said. Fourteen months later, he had weight loss, night sweats, fatigue, pain, and tumors the size of walnuts. Dammit, I knew something was wrong. Sometimes the satisfaction of being right is not very satisfying.
Now, the following might be TMI, so if you’re squeamish (or don’t give a damn) feel free to skip this ‘graph and the next. From the literal bottom up, he has three tumors. The first one may be the easiest to treat. It is a squamous cell carcinoma, essentially a skin cancer, but on the inside of the rectum. That we know they can treat very nicely with chemo and radiation. Which is good, because if they start whacking away with scalpels at that location (they always take surrounding healthy tissue “just in case”), the results can be permanently unpleasant. They’ve done so much with colon surgery in the last couple of decades where they can take bits out and reconnect the rest, but some places, they may not have enough left to reconnect. Such is the issue with tumor number one; you don’t want surgery there if it could be avoided. The next tumor is a little farther in, maybe as much as a couple of inches, also on the inside of the rectum. It is also “probably” a squamous cell carcinoma, but there is some uncertainty about whether that one was biopsied at the same time as the first one (practice, practice, practice). They’re doing another biopsy on that one Wednesday to confirm what we’re dealing with.
There is a third tumor farther up into the body. This one is closest to the juncture where the rectum joins with the colon, but I’m not clear on which side it falls. However, unlike the others, it is on the outside of the colon/rectum, not the inside. Tuesday they did a biopsy on that tumor by going in through the abdominal wall with, essentially, big, long needles (I told you to skip if you’re squeamish!) They did this while he was having a CAT scan, which let them aim very precisely. Techno-medicine—pretty cool stuff, as long you’re not the one at the receiving end of the big, long needles.
In addition, when they did a lung x-ray, they also found a spot, and “object” inside one lung. But, they can’t figure out what that is. So they are giving him respiratory therapy (I have got to get a picture of him with that mask on) to boost his lung function. The word on that one is, “come back in six months and we’ll see what it looks like then.”
So as far as I understand it today, until they see the biopsy results for tumors two and three, we can’t be completely certain that surgery is ruled out. The farthest-in tumor, the one on the outside, is the one most likely to need it. But, it’s all speculation until the results from the last two biopsies come in, and that’s gonna be at least 24 hours. If and when surgery is ruled out, he’ll come home until chemo starts. As I know more, I’ll let y’all know.
And that’s all the gory details. No, he doesn’t have tumors on his prostate (then he would have what my mom calls “prostrate” cancer :-). No, he’s not dying, not yet anyway.
Please feel free to send healing and strength. Shrink the tumors, boost his stamina. If you’re not sure about your aim, just send it to his aura; he’ll then channel it to wherever he needs it most.
And yes, we gratefully accept your real-world help, too. You’ll find a “donate” button in the column on the right.
“don’t ignore symptoms just because you’ve had the tests”
Good advice. Cannot state that enough.
Getting the tests done, paying attention to your body, and advocating for yourself in the medical system are all absolutely crucial and it’s mostly the last point that the rest of this message is about.
I lost my father to colon cancer (though probably not squamous cell and that can make a difference) in ’99. He didn’t get regular tests and when he did go in with complaints (bleeding), (1) his doctor assumed the bleeding was only due to hemmorhoids (for which he had three procedures to correct), (2) later doctors assumed previous doctors had done tests they should have but didn’t, and (3) later doctors sometimes failed to actively listen to my father who was, by this time, more assertively listening to his body and communicating his symptoms (just one consequence of which was that they left him waiting in the ER for three hours, hours during which he lost a dangerous amount of blood…and his complaint was bleeding out in the first place).
Initially, my father was glad he would retain his natural stoma (an intact anus) too.
It can also be very important to be informed and assertive in a way that doctors won’t dismiss you as challenging their authority, literally a mortal sin of the system sometimes. So you don’t want to self-diagnosis but sometimes you have to push doctors into listening and much more aggressive care.
Not saying the latter is the case in Isaac’s case, his doctors seem to be much more on the ball, but it is something to keep in mind perhaps…
Much support and healing to you both and I hope this goes very well. It’s heartening that chemo and radiation are likely to take care of this!
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