[note: this is the original version of the blog entry for this date on caring bridge. I revised and toned down the language a little bit for general consumption.]
No count today, ‘cos we cancelled this week.
Anita spent the weekend in the ICU, for reasons totally unrelated to the cancer, if you can believe that.
Most of you are aware of the menorrhagia issues we’ve been dealing with over the past year or two. If so, you may recall that more than one episode landed us in the emergency room, and one time in particular we were transferred to the ICU downtown. I could write a book about just that one event, but the bottom line is some quack decided Anita had thrown a blood clot and thus required a week of hand wringing in the ICU followed by the implantation of what is called an Inferior Vena Cava filter. These things have a somewhat sordid reputation. At the time we were told it was just a precaution and we could take it out, but after two weeks we got an entirely different story, that now Anita would have to be on blood thinners for the rest of her life and the IVC would never come out.
I mean, I wanted to wring someone’s throat. Because I hate these blood thinners, and I think this is all just a bunch of bullshit. But there were so many strap hangers signing her chart during that interval, I couldn’t figure out who’s throat deserved to be wrung.
The consequences of this little drama are as yet unfolding, and have no obvious relationship to either Anita’s breast cancer or her prior episodes with Hodgkins’ Disease, as hard as that may be to believe.
Several doctors have told us that the thyroid cancer and the breast cancer are almost certainly a result of the radiation given to treat the Hodgkin’s Disease. We don’t recall the blazoned warning: “get your mammograms religiously at six month intervals!” Believe me, if such a warning had been given, it would have been heeded, despite the revolving door of greedy motherfucking worthless doctors we have had to deal with. I’m not saying they’re all the same, but I will say we have definitely suffered an injustice from the individuals we have been dealing with up to now.
Anita has so many complications, she’s like a textbook case for some of these kids. But my observation is that they just aren’t talking to each other the way they should be. I’m literally the one who says to doctor X “you must call doctor Y” to make sure whatever you have planned isn’t contraindicated with whatever they’ve got going on. and by “they” I have in mind a whole raft of other doctors who don’t appear to be talking to each other either.
Oh, I could go on. But I’m here to tell you that the medical industry is fucked up six ways from Sunday. We’re grateful for what modern medicine has to offer, but I am convinced that many of the problems we are dealing with today are cascade issues from over-medication.
So that finally brings me to the point of today’s story: on Friday morning Anita started a bleeding from her nose. She had been suffering nosebleeds for the past week or two, but this was different. There was blood everywhere. On the walls, on the floor, I mean everywhere. I thought at the time and on reflection am now sure that most of that was a result of hysteria and panic. But it is true that Anita was bleeding from her nose and it wouldn’t stop. She refused to swallow the blood, and screamed that she must be having a brain hemmorage.
I said, “no, you have a bloody nose. get dressed, and I’ll take you to the hospital”.
She refused and insisted that I call an ambulance.
This went on for thirty minutes, twice as long as it would have taken me to drive her there.
Fortunately, Monica was spending the night, and was able to persuade Anita to let me drive her. I am very grateful for Monica’s thoughtful advice and counsel.
The bottom line: Anita’s INR (the measure of her blood clotting factor) was measured to be at 7. A normal level is about 1.3, with the blood thinners, Anita is supposed to be around 2.
So what the hay? Despite the fact that Anita is having her blood checked weekly, it turns out no one was monitoring her INR levels. It seems to have fallen between the cracks between the oncologist and the cardiologist.
I don’t know, but it seems like there’s too many specialists dinking around and no one with the proper expertise looking at the overall big picture.
If there’s a lesson in all this for any of us, its that we are all responsible for our own health, and as technical as it seems to be sometimes, we have to make sure we or someone we trust understands everything that is going on with us, and is able to exercise judgement and make these jokers aware of each other, and if necessary make them pick up the phone and talk to each other.
Anyway, Anita winds up in the ICU with a baloon up her sinus cavity to hold pressure on the broken blood vessel. We cut off the blood thinners, and in fact give her a dose of Vitamin K. I’m telling you it sucks to get old, because to me the both the ER doc and the ENT looked like they might be our neighbor’s kids in terms of age. Its ridiculous, and furthermore, its impossible to take them seriously. And that’s good, because they don’t always know what they’re doing. Neither do I, but sometimes, just making them doublecheck themselves is enough. Let me tell you what I mean.
So Anita is there in the ICU bleeding from the nose. The ER doc pushes a baloon up in there to keep pressure on the broken blood vessel. The ENT guy comes along and removes that thing and puts an even bigger, more painful one up there.
A day passes. Sunday, the ENT doc comes by and checks on the baloon. Blood flows. Admittedly I wasn’t there at the time, but next thing I know, I got the call that wer’re moving Anita downtown to have some kind of crazy radiological procedure done on her to embolize or cauterize her wound.
I say, “hold on your horses!” No, we’re not doing that, until I understand what the fuck is going on around here!
I curtail my football watching, and high tail it down to the hospital (this was a big weekend, thank God for the DVR).
After a firm discussion, and reminder of the potential anesthesiological complications associated with Anita’s aortic stenosis, my “neighbor’s kid” backs down, and we decide to let Anita’s body try to heal itself for a day or two, without the “help” of all these medications, blood thinners and surgical interventions.
So that’s where we are now, and you’re pretty much up to speed. She’s resting comfortably upstairs in her own bed, and we are doing everything we can to help ourselves, and keeping a close eye on these jokers calling themselves doctors, and beyond that we submit ourselves to the will of God. What else is there to do?
love to all.
November 8, 2011 at 8:03 pm
footnotes.
#1. after Anita passed away, the practically useless ER doctor sent us a bill that was in error. I could cite you chapter and verse, but what’s the point? I protested, their billing department told me to screw myself. “Right back at you,” I said after hanging up the phone. Ultimately, they sent the bill to a collection agency, where it now languishes. “Come and get me,” I say.
#2. the root cause of the nosebleed? Dr. Youman had prescribed something for Anita’s side effects from the chemo without checking for the interactions with the Warfarin. Oops! See what I’m talking about?