Views from the Cyberhenge

I’m happy to say the general trend of Isaac’s cancer diagnosis is good.

At the end of last week, one of the oncologists (it’s a group practice) did a little sketch for us of the lesions. (They use “tumor” and “lesion” interchangeably; I suspect “lesion” is more fashionable with the oncology medicos and “tumor” is the mark of a cancer-land outsider.) The tumors are stranger than we thought. It’s really more like one big lesion with two major lumps, the very prominent lumps being what we’ve been calling tumor one and tumor two. She said the whole thing is maybe 10-12 centimeters long. That’s a long bit of nasty.

There’s a third tumor outside the colon/rectum/anus, in his pelvis, plus some puffy lymph nodes that might just be getting huffy because of all the negative activity elsewhere. The lymph nodes may take care of themselves as everything else begins to chill out.

So now starts the chemotherapy and the radiation. We had a bit of excitement with the chemo. There is a shortage, nationally, of one of the drugs he needs. They had to delay the start of his treatment while they located a supply. It’s capitalism in action; not many people use this drug, so not much of it is made.

He’ll get the chemo once a month, but the treatment lasts four full days. The chemo is dripped into him around the clock. Although they’re doing the first round now with him in the hospital, for later treatments, they’ll hook him up with some kind of pack that he can wear at home. To that end, he’s got a semi-permanent IV hook-up in his arm that will stay there for the duration.

The radiation works a bit differently. He’ll go in to get zapped five days a week, week in and week out. (Not seven days a week, only Monday through Friday. Apparently, says Isaac, tumors take the weekend off.) He’s got all sorts of circles and arrows drawn on his belly and hips so they know they’re getting the nukes pointed at the right spots. Luckily, the pelvic tumor(s) are close enough to the anal/rectal tumors so they get zapped with the same shot. The radiation will go on continuously for as long as the chemo, anywhere from two to six months.

The best news of all is that he’s getting released from the hospital very soon, probably as early as Monday evening. The first round of chemo (it’s been running continuously) will end around 5:30 PM. After that, Gods willing and the fever don’t rise, he’s coming home. Which means I gotta get some housework done around here.

After a day or so to get him settled in, I’ll go back to work. I’m able to get this time off, for both my flu and his medical crisis, but not with pay. So if you want to help us out, we’d be grateful. Use this link or the “Donate” link in the right-hand column.

I really regret having had the flu last week when Isaac originally went into the hospital. He’s been so ill, he hasn’t been efficient at getting the info to me over the phone, which has kept me confused about which doctor is which and what’s all going on. Today, I think I’m going to sit down with the nurses and get a complete list of all the doctors (there’s got to be five or so) and their contact information. I did notice yesterday that the hospital has huge signs at all the entrances saying if you have any flu symptoms, please stay away. So, while I knew I did the right thing, I’m very much playing catch-up now.

A big problem has been that he has two overlapping conditions. He had—still has—a very bad prostate infection. He had cysts that were infected. He’s been running a fever for, well, maybe weeks now. The good news is that seeking treatment for that issue is what led them to find the cancers. The bad news is, a lot of treatment has been on hold until the infection(s) are under control.

Last night for the first time, I was able to talk to the oncologist directly, so I feel now I have a little better idea of what’s happening. One thing I noticed is that she didn’t call them tumors, she called them lesions. I have no idea if that’s a significant medical difference, or just more precise medical jargon. Add that to the “find out” list. I did ask how it all got missed when he had the colonoscopy last year. I’m not sure I completely understood the answer. She said it was hidden. *Sigh.* Ultimately, it doesn’t matter. That was then, this is now, they found them now.

As of last night, they were comfortable calling them all squamous cell carcinomas, which is like getting skin cancer on tissue inside the body. The first choice, considering where the lesions are located, is chemo and radiation. That may start as soon as today, if the infections are under control. The infectious disease doc has got to give the ok for that. The surgeon will be out of the picture, unless his bowels become obstructed. If that happens, surgery will happen right away.

So, I’m off to find out what’s going on.

Keep those cards and letters coming.

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.