I managed to sleep pretty well last night, and that was a blessing.  I’m still tired.  (I’m generally more tired these days than I used to be, but after missing a night’s sleep I have more catching up to do.)  I gave up breakfast so fast that there wasn’t even any acid or bile sense when it came up.  I thought of taking an anti-nausea pill, but my stomach calmed down immediately, so I decided to wait and see.  (There’s a pretty fearsome list of side effects for the drug, so unless I really need it, I’d prefer to avoid it.)

At 9:05 I tried calling the office to see what they’d arranged about the pump disconnect; the recording suggested that I call back during office hours (9am to 4pm).  Same at 9:15.  Same at 9:30.  At 9:45 another secretary said that the person I needed wasn’t at his desk.  He wasn’t at his desk most of the day.  It turned out, as Dr. S’s nurse explained apologetically, that they had some kind of even going on, so he was pretty much not availalble.

At about 10, my sweetie and I walked seven blocks to the bank, stopped on our way back at a drugstore and a health food store (where they still didn’t have lavender bath suds or oil or whatever.  I was dropping by the time we got home, but I’d had almost no dinner last night (just a Boost) and had given up my breakfast.  My sweetie got me some organic apple sauce, and I nibbled a little when I got home, but I really didn’t like it much and I didn’t eat much of it.

While we were sitting there the nurse called, apologizing for the delay in returning my call.  The doctor said that Friday would be too soon, and they weren’t comfortable arranging things at a hospital they don’t know, where the staff might or might not be competent to deal with my port.  So she would meet me at 7:00 (or shortly after) on Thursday, 2/23, and just disconnect the pump.  My sweetie will stay in the cab with the luggage and we’ll be able to go straight to the airport.  (This, of course, assumes that the flight isn’t delayed or canceled, but that’s just part of the territory.)

My sweetie left for his museum gig at about noon, somewhat tentatively.  (I assured him I’d be okay.)  I did a bit more work, but the particular item I was working on was making me dizzy, so I stopped and rested, and had a Boost for lunch.  That helped a lot, and gave me no trouble.  At two, the friend who’d agreed to accompany me to the hospital called; I was just about ready to go downstairs to meet her.  I was down there for about five minutes when she came by, and we were at the hospital shortly after 2:30.  They called me for vitals (no blood today; temp was 97.4) at 2:45.  We had only a few minutes to wait; one of the nurses disconnected my pump and we walked out of the hospital at 3:02.  That’s not too bad.

When I got home, I took a shower (yay!) and stretched out.  My sweetie came in a little before 4:30, and soon after that our internist called, having received the status report from the oncologist and touching base with me.  I thought it was good of him to call, but I really didn’t have anything to ask him.  My sweetie, however, was looking for a referral for a therapist, so they spoke.  It was, all in all, a lovely gesture.  We all hope that I have some success with this drug.

We also had an automated call confirming my sweetie’s appointment on Friday with a podiatrist.  It was a busy day for phone calls.

I can’t say that I feel spectacular, but neither do I feel awful.  I’ll see what happens with supper, and if I have problems I’ll probably take an anti-nausea pill.  I’m hopeful that I’ll sleep well tonight, especially with the pump removed.  That would be nice– two nights in a row.  One day at a time.  Happy Thanksgiving.

We both slept poorly last night, largely because of a late telephone call from the folks at Gilda’s Club wondering why my sweetie wasn’t going back.  (He had called to let them know that he wouldn’t be there.)  It was 9:40 when the phone rang– and stopped.  And then rang again, and that’s who it was.  9:40 is well past our usual bedtime, and we were both drifting off.  It’s the time that I get the best sleep, and between assorted discomforts and the foolish bag (which I needed to rotate whenever I turned; not difficult, but it required waking up), I found it extremely hard to sleep again, and I kept waking.  Sometimes I slept again quickly, but woke quickly too.  It wasn’t pleasant.

So today it’s a little hard to pick apart how much of how draggy I feel is from lack of sleep and how much from other issues.  I am, after all, still being infused.  That doesn’t end until tomorrow afternoon.

As we arranged, I called the secretary to see what they’d worked out, and he said something about “very early Wednesday morning”.  I’m pretty sure he meant Thursday, but it would really have to be early for us to feel comfortable about getting to the airport on time.  With the best will in the world, the hospital can’t commit to accomodating us; shit happens.  Anyhow, I pointed out that Wednesday wouldn’t be enough time with a Tuesday infusion, and he said he’d talk to the nurse and get back to me.  I called again at four and he’d left for the day.  I left a message with the nurse; she hasn’t yet called back.  I’ll try again in the morning, but this sort of administrative followup is exactly the sort of thing I hate doing, even when I have plenty of energy.  My sweetie is happy to help, but I think it behooves me to speak to people myself whenever possible, to make sure they understand I’m competent.

i did a bunch of work, but also took a lot of rests.  I developed a headache in the late morning, probably from the infusion.  If I speak to the nurse I’ll mention it to her.  Otherwise I’ll tell folks tomorrow, when I have the pump disconnected.

I have not wanted to eat much today.  Mostly, I’ve wanted to sleep.  But I don’t feel terribly sick.  My temperature is still below 98, and the pain under my ribs is less than it was.  So another day.  Happy Thanksgiving.

Well, this was a rough one.  I was very nervous about the new drug, especially since I’ve been aware of losing energy, of feeling mildly feverish, and of having increasing discomfort.  I can feel myself (no pun intended) that I don’t have a normal belly.  The pressure has been increasing, and the pain under my ribs when I yawn or cough is worse.

I related all of this to Dr. S at the exam, and also mentioned the difficulty in flexing my right ankle.  (I’ve begun to recover some strength there, but it’s nowhere near normal.)  He examined my very thoroughly (in the presence not only of his nurse, but also of a volunteer, whose status was never fully explained to me). The frightening part is that Dr. S says that, to judge from what he was feeling, a scan done today would look quite different– worse– than the scan done only ten days earlier.  I didn’t doubt him.  We were all glad to start the treatment right away.

One helpful note:  my blood counts have been fine throughout, which means that I don’t need to call in or go to the ER (as the original chemo said) if my temperature is over 100.4, but I should call them if it gets as high as, say, 101 or 102.  I did find that reassuring.

And so on to the infusion.  As always, the nurses are wonderful.  They’d said this would be three hours, but in fact it’s only about two.  (Of course, we started two hours later than the scheduled time, but that’s only to be expected, especially after the long exam.)  The first drug takes an hour and a half; the second takes fifteen minutes; the third about five.  Then they hook up the pump and I’m good to go.

A wrinkle:  Dr. S has said more than once that I should book my flight and they’d schedule around it.  So I did– without realizing that February 20 is a holiday, so I can’t have my infusion then.  Having it Tuesday means pump disconnect on Thursday– by which time I’m supposed to be on a plane.  We’re trying to work something out.  (I’m wondering if I can have it disconnected in Florida.)

Meanwhile, as the infusion continues, I take a deep breath and realize that the sharp pain under my ribs is almost undetectable.  I yawn again– same thing.  I cannot believe that the drug is having an effect so quickly, but whatever it is I say less pain is a Good Thing.  And, as the infusions finish up at about 3:00 I realize that I’m not warming up as I usually do at about that time.  (Indeed, when I take my temperature at home it’s abnormally low:  97.2.  But I don’t feel the depletion that I feel when it’s elevated.)

Tomorrow I’m supposed to call to see what they can do about scheduling things so I don’t have to change flights.  We have trip insurance, and we’re in good enough shape that we can afford to rebook if necessary, but it would be really nice if we didn’t have to.

Anyhow, tonight I have more energy than I’ve had in days.  I’m attached to my pump.  I can’t shower (but a lower body soak in a lavender bath is perfectly okay).  One day at a time.  Happy Thanksgiving.

Ah, Sunday.  I didn’t get up until after 6:30, which for me counts as lounging around in bed.  I spent some time online and was dismayed to realize that the project I’m working on had another additional section that needed work.  I spent some time on it, but not too much.  (It is, after all, Sunday.) (But tomorrow will be taken up with my three-hour infusion, so I might as well get something done today.)

I did the hand laundry and read the paper.  Because the new drug might cause hair loss, and it’s February, my sweetie got me the kind of liner that cyclists wear under their helmets; it fits snugly and doesn’t show up much.

I went back and forth all day between vegging out in front of the TV and working at the computer.  I got a fair amount done, but there is far too much still to do.  (And I thought I’d done it already.  That’s the worst part.)

I finally got around to ordering Smiley’s People at Amazon.  I have Tinker, Tailor, but we never ordered the sequel because the recorded format is so inconvenient to play.  (Each disk has two episodes, but you can’t simply play the whole disk; you have to select the second half and play it.)

So it was a quiet day.  I can’t honestly say that I feel terrific, but I don’t really feel bad.  I’m definitely nervous about the new drug.  I spent some time reading the blog in the comment on yesterday’s entry.  It was not easy reading.

So that was my day. I expect tomorrow to be a real siege, but I’m glad to have the chance to deal with it.  (Yes, really.  Consider the alternative.)  Happy Thanksgiving.

I haven’t done a whole lot of active stuff today (I think that making the bed yesterday was my exercise for the time being).  I had my family calls in the morning, and did a little work, and both Times crossword puzzles, and so on, but I this afternoon I noticed that one of the cable stations was playing The Fisher King, which I hadn’t seen in ages.  Even with ads (and a few noticeable cuts) I enjoyed it, and delayed my lavender soak until it was over.

My sweetie ran into our hematologist friend who has spoken to his colleague and told her to expect to hear from us.  We are blessed with the support of our friends and family.  Happy Thanksgiving.

Friday is the day we change the bed linens.  I woke up comfortable, but the sheet under me was damp.  (I sleep next to the radiator, and this apartment is generally far too warm.  Normally I avoid problems by not covering myself with blankets or sheets (or, for that matter, clothing), but I was under the sheet and our very lightweight blanket (actually a flannel sheet).  I was glad it was time to change.

Besides, it’s the first Friday of the month, and that’s when we flip our mattress.  So I stripped the bed all the way down, and was not surprised to discover that the mattress pad, while not wet, was cold where I’d lain on it.  I pulled it off.

Then I went back to work until my sweetie was ready to help me flip the mattress, at which point I could start making the bed.  I put the mattress pad back on, smoothed it out, and realized that I should have rotated it, so the spot I’d slept on would be at my sweetie’s feet next week.  So I took it off and put it back again the way I wanted.  Then I put on the fitted sheet, the top sheet, the pseudo-blanket, and the spread.  Great.  Then I got out the pillows.  (I can’t imagine that anyone really wants to know all of this, but I want to write it and it is, after all, my blog.)  (Yes, I could use a cut. So sue me.)

We each use two pillows, one rather firm, one fairly soft.  We put them into pillow cases and then stuff a pair into each of our pillow shams. I realized that I’d taken only three cases out of the linen closet, and I had no idea where the fourth was.  So I grabbed something that didn’t match.  I always put the firm pillow in first and then stuff the squishier one on top of it, so I figured the non-match for the firm pillow, so a peek-through wouldn’t reveal it.  And then I realized I’d put the other pillowcases on “backwards” (i.e. on the wrong pillows).  So I reversed them.

Aha.  Bed is made.  (I’ve been going back and forth to the computer in between stages of bed making, but I’m still pretty tired by the time I’m done.)  So I’m relieved, but not delighted to discover the missing pillow case.  I disembowel the affected sham, exchange the non-matching case for the right one, and replace it.

I cannot ever remember going through quite this much of a siege to make the bed.  I was glad I made some real progress on the work I’ve been doing.

That, thank goodness, is the most exciting thing that happened all day.   Fortunately, I’ve had a fair amount of energy today.  And I also got another lavender care package in today’s mail, and that was lovely.

Ah.  It’s evening.  Happy Thanksgiving.

I confess that I had a bit less pep today than yesterday, but it hasn’t been too bad, and I got a lot of things done.  I worked steadily all morning on updating the web site (and making sure it was all in line).  Note that when i say “all morning”, I mean “starting at about 5:30″, and, in this case, going till after 1pm.  I got a lot done, but it did take a lot out of me.  (I didn’t want to stop half way because when I do that I lose track of exactly what I’ve done.) There’s still one section to attack, and I know it has some updates, but I’ll deal with them tomorrow, if I’m up to it. (My sweetie went to the beach today, leaving early and not getting back until after 2:30, so I had little to distract me.

I also arranged with a friend to accompany me to the hospital next Wednesday for the pump disconnect, so my sweetie can get to his usual stint at the (American) Museum (of Natural History).  I took a support call, as it were, from my father, who had turned off his new iMac and couldn’t turn it on again from the (old) USB keyboard he prefers to the tiny wireless that came with the machine.  I suggested that he turn it on using the power switch on the machine itself, but I couldn’t tell him offhand where that was, so I said I’d look it up on the web.  I hadn’t brought up the page yet when the phone rang again and he said he’d found the button, pushed it, and all was well.  I breathed a deep sigh of relief.

Happy Thanksgiving.

Well, today was a bit different from yesterday.  I was much more energetic, and I got a lot done.  I booked our Florida flight.  I renewed my prescriptions.  I found out what I needed to do to arrange for a consultation at Weill Cornell.  I had lunch with a friend and former colleague (and that worked out well; I had cartons that she can use to move and a cookbook that I’ve never actually cooked from; she had helpful information).  I got back and did a bit more work and then I took some brief rests in between which I did more organizing.

I haven’t finished for the day, but I won’t be able to be at the co-op Board meeting tonight because the timing just doesn’t work out, but I’m amazed that I’m still vertical and happy about it.

Wow– Happy Thanksgiving!