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OK, one of you reminded me I didn’t let y’all know how it turned out – sorry – I appreciate that y’all are thinking about me and I shouldn’t have let you worry.The dye test took 20 minutes – the bureaucracy leading up to it meant I was there for over two hours :-) There went the morning. I went for my followup shot that afternoon, and persisted in asking about the results until they tracked them down. They were fine – no leak – so my doctor wanted to give me that last hypo that they had stopped. It seems to be rare, expensive, fragile stuff, and they don’t keep it on hand. So we waited for it to be delivered in a taxi. There went the afternoon – for a 5-minute shot and a 10-minute infusion. I plead mental distress and exhaustion-from-waiting for not letting y’all know.
Today went great – I was in and out in less than 2 hours and nothing bad happened, except my white cells are way down – the first time *ever* any of my blood counts have not been at least low normal. I am really bummed, since I’m getting on a plane, one of the great spreaders of everything, next week. Talk about Murphy. Maybe the white cells will have recovered. If not, I’m already equipped with masks, and I’m planning to get a giant bottle of waterless hand wash. I went to work this afternoon and practiced opening doors and pushing elevator buttons with my elbows.
Which reminds me of two studies (no, three) I’ve seen recently. First, they did a study to see what cleaned hands best – they put people’s own germs on their fingers, and then cleaned them with hot water and soap, waterless cleaner, and plain water as a control. Guess what cleaned best? The researchers were amazed to find plain water removed more germs – and have no theory as to why. I always hated restroom liquid soap – the scent is always wrong.
Second, they did a study of the timing of the annual flu season after 9/11, when Americans weren’t flying nearly as much. It was delayed here, but not in France and other countries where flying didn’t drop off.
Third, and maybe scariest, they put a bunch of people with colds in motel rooms overnight and then tested the surfaces after the rooms had been cleaned. Most surfaces, including non-obvious things like the pens, had cold germs on them. They then took cold germs, put them on surfaces, and had the person they took them from (researchers aren’t mean) spend the night in the room. They did indeed pick up the germs from the surfaces.
I work with some people who spray phones and won’t take mixed nuts from a bowl. I may be about to become one. Maybe I’ll travel with a giant bottle of Lysol – but wait – that’s a liquid and can only go in my checked luggage. Guess that goes for the hand cleaner, too. Rubber gloves? Y’all just visualize my white cells regenerating for the next week, please…
Every trip an adventure. I seem to be destined to do all possible procedures. Not that anything major has gone wrong, just a series of annoyances. The whole story is below, as amusing as I can make it. If you don’t want the blow-by-blow (which does involve a bit of graphic detail but nothing near as bad as watching ER with your eyes actually open), the brief news is my port may be leaking and I’m going for a dye test tomorrow to be sure one way or the other; my heart function results are back and are the same as the baseline, which means I’m not having any heart damage from the chemo. My surgeon is back from China where she was adopting a baby girl (8 months old), not yet back in the office, but my oncologist will talk to her anyway. I have about an eighth of an inch of new hair, enough to be visible as a faint shadow even without the magnifying mirror, but the eyebrows continue to disappear.
Robert and I are going to West Virginia to see the turning leaves Oct. 24-31 – fly to Pittsburgh Wednesday after treatment and back the next Tuesday, run around with brother Eric and Suzanne on the weekend, and maybe look at some houses suitable for retirement in a few years – I surf the Internet MLS and other listings, in case something comes up we could buy now, and get a feel for the market. Hilde is being flown to Dallas the 27th for a second interview with an electrical contracting firm, and has had several other first interviews. Arend is doing well at SAIC although we don’t hear from him much. I made his plane reservations home for Christmas, and he will be able to make his sister’s graduation in December. It appears to be about the same weather in Lubbock, Charleston, and Austin (low 70s) and cooler in Chicago (50s). Difference is, in Austin it is still getting hot(mid-80s most afternoons).
Blow-by-blow starts here
Not only did my port refuse to give enough blood today, *all* of my veins were stubborn. They tried both arms, a wrist, the back of a hand. We did the usual calisthenics. After each piece of the treatment – saline, two different anti-nauseas, Herceptin, Fluorouracil, then a small hypodermic of Cyclophosphamide, the nurses tried again to get more blood out of the port, with more calisthenics. (Head between the knees, arms out, arms down, on your back, turn your head, breath deeply, cough). Each of these is presented formally, your name and the drug read aloud, a safety check, but rather like a wine steward presenting wine for each course (or so I believe from the movies and TV, never having encountered a wine steward in person.) We were down to watching the speed of the saline drip to find which weird position was fastest. This is hard to do when holding your head in a specific position, so I relied on the nurse’s report – “Stop there!” They pulled the needle and put another one in. I think at least part of it is the temperature of the clinic – consistently even colder than my office, which stays about 68. (I took a poll of who was cold on that end of the building, and it was all but one person; maintenance agreed that 68 was too cold and said they would fix it, but…) At this moment, every vein on the backs of my hands is standing up about a quarter inch. Bleh! If only I had a needle ;-)
Finally we gave up (well, we can try the back of the other hand tomorrow – or the port next week). The last bit was two giant red hypos of Epirubicin (they get injected in the IV line, in case you are having unpleasant visions), and most of the way through the first one, I said “Should I be feeling anything?” One of the things that every single patient information sheet says is “Tell the nurse immediately if you feel any burning,” which is a sign that the chemical has leaked outside the vein. Well, I did, just a teeny bit, when usually what I feel is just a slight coolness or nothing at all. So I said so. It really just felt like the burning after a mosquito bite.
This occasioned the consulting of at least five other nurses, the nurse supervisor, my doctor, the pharmacist, and a lot of documentation. Everything stopped, and ice was applied. Then, of course it was impossible to tell if there was any more burning, because the ice was causing burning. Everything looked normal, but of course, red from the ice. They take leakage very seriously, because, outside the vein, the chemicals can cause serious tissue damage. (We already know what they do to the rest of your body, right? But that’s good, because, as my oncologist says, the good cells have a whole crew to reconstruct them, and the cancer cells are like Orcs – nobody cares if they die, and there’s no infrastructure to replace them.) The pharmacist came out with a vial of sodium something, which was listed as something to use in case of leakage – diluted and injected around the site. Mmmm. He said it was also an antidote for cyanide poisoning. I though cyanide was so quick there wouldn’t be much opportunity for an antidote, but who knows? Perhaps there is a murder mystery plot here – murderer puts the cyanide in the wine or chocolates, whatever, takes some along with the victim, and then pops into the loo for a quick injection of sodium something to counteract his dose.
One of the nurses who has been doing this for years had already said that they used to use injections around the site, but it didn’t seem to help much and the injections themselves were an “owie” (perhaps she started as a pediatric nurse?) She tactfully told him she didn’t think it was used any more. There was more discussion just out of my earshot – well, not quite – I could hear just enough to get the gist, which was that the documentation and . The final consensus was there was not really an antidote, that dexoyrubicin was an irritant rather than a vesicant (this is enlarging my vocabulary, too), and that there is no antidote. I should apply ice for 15 minutes four times a day, which might not help, if there was indeed anything to help, but couldn’t hurt. Tomorrow I go back for the bone marrow booster injection, so they’ll take a look then. The dye test is in the morning, so we will know for sure by then if there were actually a leak.
A quick Google search gets me a first hit with a table of all chemo that lists Epirubicin in the vesicant, not irritant, category. I read the whole document and I wish I hadn’t. It is, as usual, a Canadian document; the best hits on cancer and chemo are usually British or Canadian, I guess because of their national health services. The U.S. sites, even the government ones, tend to be much less informative. I will remind myself that at least ten experienced medical professionals looked at a lot of documentation and came to a consensus. I will remember that leakage is extremely rare, and I was probably hallucinating or it was a reaction to the adhesive bandage over the site being removed when they switched the access, or something. I will not think about it until tomorrow.
Thanks for listening.