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So I’m back among the semi-conscious – went back to work after yesterday’s Herceptin infusion. Naturally, the port was clogged – apparently the clog creates kind of a one-way valve, so although stuff can go in, they couldn’t use it for the blood draw, and did that from my arm – but no more drain cleaner until the next Taxol.
Once upon a time I had a couple of nice large cotton batiste scarves – black and cream, which would have been perfect for around the house and yard. They’d go with everything – y’all know I’ve got this thing about stuff matching. I can’t believe I got rid of them – I still have the scarf my freshman room-mate gave me for my 17th birthday, not to mention a gold silk one printed with cactuses, donkeys, and Mexicans in sombreros (it’s nicer than it sounds) that my mother got before I was born. But these nice little cotton scarves are nowhere to be found.
Ah, I said, I’ll just pop out to the fabric store and get some batiste or something. Nothing doing. So we went by Walgreen’s and I got a couple of do-rags. Robert checked out – I hung back out of sight. Who knows what they thought the middle-aged blond guy was doing buying do-rags and bandanas. Anyway, they’re cheap, black, lightweight, and keep the draft off my head. And Robert and Arend don’t have to look at my rather pathetic head. Unfortunately it’s just short of complete hair loss, so it is the worst of both worlds.
I was diagnosed with breast cancer in June 2006. The Chemo Chronicles were originally written as updates for a few friends and relatives, and expanded to a wider email support group. I’ve posted them to the blog with their original dates.
My scalp started hurting Thursday night – it really feels like your hair hurts – touching your hair hurts, the way it does when it is bent the wrong way. So Saturday a.m. I went and got a wig. It was barely shedding then, and I thought it might just thin – but I absent-mindedly ran my fingers through it Monday and lots came out. By now it is coming out in handfuls. So when I go back to work tomorrow, I’ll probably wear the wig. Maybe shave my head Saturday unless I can manage to pull it all out before then – it is oddly satisfying to pull out little tufts of hair. It’s been above 100 all week – way too hot for a wig, but especially over what’s left of my hair.
The wig does look better than my great aunts Eunice and Iona’s, who wore theirs rather like hats once my Aunt Doris persuaded them that beaded hair nets over their very thin frizz wasn’t the thing. I was terrified into my 30s that I was going to go bald as they and Doris did. They trimmed it on my head, and it looks almost like my own – less gray ;-) Don’t know why this is bothering me more than anything. I’d really like to just wear scarves, but I can’t deal with half the agency commenting, being sympathetic, etc. Monday – almost 4 weeks after I cut it – I still got 4 or 5 comments on my hair – 1 from someone who had already commented once.
I have been in a kind of limbo for several days – like I am suspended waiting to be whacked out and bald. Maybe it is the beginnings of depression… It is annoying because I feel fine and could be doing useful stuff. Of course, we usually veg out when it gets this hot, anyway.
Chemo visit yesterday was wearing. My port-a-cath clogged up and they made me assume all kinds of odd postures and breath deeply in them. For example – lay your medical barcalounger all the way back and then roll all the way over on your left side (no, putting your knee there snaps the lounger upright, which is both startling and not the desired result), now raise your arms over your head, turn your head as far as you can over your right shoulder. Ok, still no blood in the line. Sit back up, put your head between your knees and touch your toes. Take deep breaths. Ok, leave your head down and hold you arms straight out to the side. Still no blood (except probably in the tiny veins in my eyeballs ;-)
So then they put in some kind of drain cleaner. It took almost two hours to work, and so they drew blood from my elbow, and I went to talk to the scheduler about my next appointments. Then they tried to open a vein in my arm (the catheter went in after lots of thumping to make the vein stand up and then kind of curled up so nothing would go in – hell of tender spot) and then eventually did the Herceptin into a vein in the back of my hand while we were waiting for the drain cleaner to work. Once it did, they did the premeds (saline, anti-nausea, Benadryl (yeah, really, IV). They have you read the label each time on the meds, kind of like a wine steward… (not that I’ve ever seen a wine steward except on TV). I had a 1:30 appointment, and didn’t get out until 5. Which meant I wouldn’t be finished with the 24-hour pump until almost 5 Thursday.
Alas, it was not to be. I woke up several times in the night because it seemed the pump was *not* making its tiny-baby-snoring sound, just the click. But when I got up, it was still snoring, and so I decided that Robert was drowning it out when I was in bed. Then annoyingly, since I was not going to work and Robert has instructions not to wake me, at exactly 6:30, which is when I normally drag myself out of bed, the high-pressure alarm went off. OK, turn it over so I can see the readout. (The thing is a marvel of design – the bag it lives in has the straps attached on the same side as the readout window, so that if you wear it with the window visible, it doesn’t lie flat, but sticks out at an annoying 45 degree angle.) Yes, it says “HI P”. Unroll the extra 10 feet of tubing – no kinks, no joy. Dig through the giant bag of going-to-chemo stuff (blanket, chemo spill kit, roll of tape, books, documentation…) to find the instructions. They say straighten out the kinks. No kinks. Dismantle the pack – in a handy compartment on the bottom – inside – is the card of the pharmacologist I am supposed to call in case of problems. I call. The phone rings and rings – ten times – I’m a 24 hour on-call myself and counts rings for rollovers automatically. No rollover to the service. Another hunt for the service number. Call them. “No, I’m sorry, we don’t have a listing for Dr. B___“ What about my oncologist’s nurse? “No, sorry – canIputyouonholdclick.” Which gives me time to agonize about having my oncologist, the mother of two pre-schoolers paged at 6:45 a.m. on her day off for a problem that is not really hers. They come back, I give them her name. She calls back in less than a minute and says she’ll take care of it. In fifteen minutes or so the pharmacologist calls – “Hi, this is Chuck from the cancer center” – eventually I figure out this is Dr. Charles B____. He suggests I look for kinks. I say I’ve been there, done that. Is it still alarming? It’s off now, I say – why is it off, he says, disapprovingly – because the pressure alarm goes off if it is on, nothing is going through anyway, there are no kinks – and – now that it is daylight and I have been poking at the thing, turning it on and off, etc., I believe that there are solids in the line. Oh, he says, then it should be off. Exactly, I say, very quietly in my head. You should come in, he says – there will be nurses there at 8:30.
I do the math. More than two hours delay – I’m gonna be stuck with this puppy past quitting time and there for for a second night – quite uselessly, since the infusion will be finished before I go to bed, but I can’t disconnect the pump myself. Bleh.
So I have Robert stay home and take me over there. We all look at it and agree there are definitely solids in the line. Chuck comes and looks at it and says – again- well, there shouldn’t be solids in the line – we’ll make a new batch and restart. He will track down my doctor and see whether I should stay there and get the rest of it (please no – even if they double the rate, I’m there for the rest of the day and I didn’t bring my blankie or a book and I’ve gone through their three good magazines already) or just restart or what.
He eventually comes back and says we will just restart, which means 11 hours, at least until 10 p.m., obviously after hours. We go over how to turn off the pump and close the clamp on the line. Marilyn the nurse disconnects the IV and runs some saline in – it doesn’t go – she pulls out and doesn’t get blood. She announces to Chuck (and me, since I’m there) that the port is clogged and she can’t use the drain cleaner again. He says “What do we do now?” I, with visions of having to have the damn port replaced or other equally unpleasant alternatives – running the toxic Taxol straight into a vein and permanently whacking it – say quietly “Start crying?” They take this as the sort of desperate joke it was, and Marilyn says, “Oh, I’ll just remove this and access it again.” Bleh again. Normally I put a huge glob of anesthetic cream on the port and cover it with saran wrap (sounds weird, works great) an hour ahead of time. It’s still weird, but not painful. They can use ether spray, which doesn’t really numb well, and burns. I ask for that. She puts it in and gets blood, but it hurts and burns. Bleh. Chuck goes off to mix the Taxol – they never mix it until there is a good access. I wander out to the lobby to update Robert that it will be 15-20 minutes and get him a cup of coffee.
The guy with prostate cancer in the next chair strikes up a conversation about the entire history of his treatment since 2001, starting with what his wife said when he was diagnosed (essentially that his being sick would be too much stress on her and their young daughters – and locked him out of the house – sure this isn’t the whole story, but… and ending with his proposal to an old high-school friend who is now a widowed Methodist minister in the baggage area of Terminal 2 at O’Hare (the proposal, not her ministry). I realize 45 minutes had passed, and said, “Hey Marilyn, what gives?” She checked with pharmacy, and they were worried that the precipitate came from defective tubing and were looking for some from another batch. I update Robert in the lobby. (At my office, some people actually think his name is “Poor Robert-in-the lobby” because we commute together and he was always waiting for me – I would break off discussions with I’ve got to go – poor Robert’s in the lobby”.)
Half an hour later, still no stuff – I ask Marilyn again. Chuck comes and says he has been emailing around to see if anyone else has seen this problem. Conclusion is no, but nobody thinks it is a problem with new tubing and a new batch. Eventually it comes – it is now 11. She hooks it up and I’m out of there. Robert drops me off at the house and I start writing this. The phone rings. It is Marilyn. Chuck has been calling around and they have come to the conclusion that it was heat that caused the precipitation and if I’m not working (I was but remotely) could I dismantle the bag so the tubing and IV were not against the pump, and could I come back in so they could add a filter to the line in case it happened again. Bleh. I told her I would if the van would start, since we don’t drive it much and the battery tends to die. Then had to persuade her that it was only a few miles, if the van started at all it was perfectly fine and would not strand me on the expressway, etc. And that I didn’t really need to call back and tell her if it started – if she didn’t hear from me, I was on my way. Naturally, I turned the key and absolutely nothing happened, as if there were no battery. I called Robert and asked him if he had actually put the battery back in when it took it and had it charged two weeks ago, after the last time I needed it and it wouldn’t start. Yes, he had, but he hadn’t actually connected it. We had a discussion about why once he was driving me over there. First he said that he had the new license plate decal, but hadn’t put it on, so it wasn’t legal to drive it anyway. This struck me as the kind of logic that men accuse women of using, and I said so. We had a brief discussion about that, and then he said, well, it was very hot, and there are lots of wires, covers, and tight connections to be negotiated in small space, and he was exhausted from just fastening the small tight awkward clips that keep it from falling out and he had never gotten back to it. At least that was logical and understandable.
So I arrived at the clinic, parked him in the lobby, went back to chemo, where everyone stopped by and said “Are you here again?” Marilyn disconnected everything and sent it back to pharmacy, where ther installed a whole little complex of filter, Y’s with new connections stubs and other oddnesses. When Marilyn picked it up, I could hear something being said about getting my frequent flyer card stamped. Chuck came out and said if I came in one more time today, I’d get a free toaster. One of the nurses asked if it was the one downstairs that didn’t work. We had another discussion about the heat theory, and I pointed out it had been very hot yesterday, that I had been outside on the porch some, and the house was unusually hot (even I was hot, and looking for something other than a grey flannel nightgown to wear – even my new comfy T-shirt night shirts are heather grey and kinda thick.) He said he hadn’t though about that – the first one was no problem, with same pump, etc., but it was only in the 80’s that week. I said I would try turning a hair dryer on it, testing the theory and earning myself a free toaster if it worked. He seemed to have developed more of a sense of humor and better bedside manner – maybe he’s just not a morning person.
I got home and resumed this account – and the bloody HI P went off. There was a kink, blessedly, which I straightened out. Perhaps I will make it through the night, just pop in and have it detached in the morning, and life will be good until the fatigue kicks in tomorrow night. Sigh.
I didn’t see my oncologist last week – just the Herceptin drip. She did an exam yesterday, and said she can barely tell where the tumor is – that it has really softened and broken up. Stupid me couldn’t really tell it was there in the first place, but I thought it was feeling different. She also pointed out that the nipple was no longer inverted. Anyway, that’s good news after only one cycle of treatment…
Also, all my blood levels – platelets, red blood cells, and white cells, were in the upper normal range or even above. So my body has regenerated all the good cells. My oncologist says cancer cells are like orcs – they get hurt or die, and nobody cares. But my blood cells have a whole support crew to repair or replace them.
Am reading a bunch of odd things – one about “intelligence in nature” by an anthopologist who studies healers in Peru. My brother gave me a serious little talk about not going to Peru and eating roots a while back. He has this idea I’m still some kind of New Age hippie chick – which I wasn’t actually ever – you know that – and I think he still thinks of UUism as some kind of weird New Age religion. I told him if conventional medicine didn’t work I’d be more likely to go sit on a W. Va. mountain and eat ginseng. But you know, Taxol comes from yew trees. It has a rather controversial history. See http://en.wikipedia.org/wiki/Taxol
If you have made it all the way to here, bless you.