Another good day.  The weather in the morning was mild and sunny, but the humidity was rising.  There’s a front coming through, and tomorrow will be sunny, but much colder and windy.

My sweetie did his usual morning errands, and when he finished we went to the hospital for a wound check (the port).  Unfortunately, when we got there, the surgeon was in the middle of a procedure.  We waited in comfortable surroundings for about forty-five minutes and then he showed up, checked it, passed it, and that would have been it, except that I figured I should give them my new Medicare card, and they had to find someone from the right office to get that down.  As we walked back to the subway, arms around each other’s waists, a passer-by commented on our obvious affection, and said it made him want to call his wife right away.  We were amused.

I hadn’t had my usual mid-morning snack, and my legs felt like lead when we got out of the subway.  We stopped briefly at a neighborhood grocery store to look for a kind of cracker I remember from long ago– pretty white, not highly seasoned, and you can crack them in half (making two half-thickness disks).  I didn’t see anything similar.  I looked online when we got home, but didn’t find anything there, either.  Meanwhile, I had a little cheese and drank some water and felt greatly revived.

A couple of members of the Panix community suggested that I should have posted my note to a group with a wider audience, so I did that.  Again, the outpouring of support and sympathy, while not really surprising, is extremely helpful and a bit overwhelming.

I spent the afternoon doing an assortment of online chores.  My sweetie called an old friend to let off some steam.  It’s the first time he’s done that, and it did him tremendous good.

Tomorrow at mid-day I’m supposed to have my second infusion.  I hope I’m okay with the drug and that the infusion goes smoothly.  And I really hope that I can go to the theater on Sunday.  I’ve been looking forward to _Follies_ for a long time.

Another quiet day.  I spent it at work, for the most part.  I posted in our local newsgroups, which was hard, and to LiveJournal.  I tried to post to Facebook, but gave up because I couldn’t figure out who would see it, whether the link would work, and how many items I would have to post to make it visible in the several places I wanted it to be visible.  (I have recruited help from my niece, so I’ll probably be able to deal with that tomorrow.)

Meanwhile, I fixed a glitch in the blog setup that led to some bad redirections (thanks, Mike J), had an early dinner with my sweetie (who has a meeting of the mineralogical society tonight), and now I’m on my own.  I may visit a neighbor briefly, and come back in time for my parents evening call.

First off:  Who dunnit?  I didn’t order those puzzle books from Amazon.  I’ll bet it was one of you, but I don’t know who.  (There are a few good candidates.)

As to the rest of the day, it was good.  I had more energy than yesterday (which was more than Sunday which was more than Saturday).  I spent three hours this morning with my out-of-town friend, who called first (and then again) just to make sure I was really all right.  I think when she saw me, she realized I was.   We had a lovely time catching up on lots of stuff, and she’s someone who can ask questions I’ll let few others ask.  It was wonderful.

Before that, and afterward, I was on the computer, doing such chores as I could focus on.  My sweetie and I spoke to our financial advisor, who had a couple of interesting recommendations in terms of practical things that hadn’t yet made it to our to-do list.  We’ve been with her for twenty years, and she was clearly shaken to learn what was going on.

And that was the day.  Except for the mystery packages from Amazon.  So, I ask again, Who dunnit?

I got up with a list of chores to attend to, and it was far too early (5:30am) to attend to any of them.  Shortly after nine I started making calls.  Medicare thought I would need to change to the new card, but suggested I call Social Security, where the wait for an agent (nothing on the menu came close to matching) was over ten minutes.

So I went on the the next step:  How to establish that I actually paid check number <whatever> in the amount of <whatever> to cover my Medicare expenses.  That one was easy.

On to Verizon:  I told them I’d like to get an iPhone with a Verizon contract, but that, as a cancer patient, I might not make it to the end of the contract, so I wanted to know what arrangements could be made.  I spoke to a front-line rep who had to pass me to a customer service person, both of whom (somewhat to my surprise, although thinking about it, of course they did) expressed sorrow and good wishes.  By the way, there would be no early termination penalty, but if he wants, my sweetie can assume the account.  So now all I need is to get the phone.

I cancelled my mammogram (a week from Wednesday).  I wrote to our financial folk to arrange a conference call tomorrow afternoonm just to verify that our accounts set up so that transfer won’t be a problem.  And, in between, I spent some time doing chores at work.

After lunch, I went to the bank, and spent more time going back and forth between the computer and the bed.   It’s a beautiful day.  It was 60 degrees F when I went out, sunny and fresh and just lovely.  I gave myself about a half hour to walk (as recommended by the folk who put in the port; I wouldn’t have minded walking more, but there’s no question that I was feeling it.

Now we’re just settling in before dinner.  We have a meeting tonight, of the committee that runs the fitness center in our co-op, but I don’t expect to spend much time at it.  Eight o’clock is late for me to start a meeting even when I feel well.  But I figure that I’m about to drop a bombshell on these people I’ve worked closely with for the last five years, only three of whom know what’s happening, and they’re going to have to find someone to cover my chores for me.  This also means that the news will begin to percolate through the co-op grapevine, and that’s what I’m really dreading.

Despite the time change, I actually managed to sleep until the clock time was normal, and I felt much less depleted today than I had yesterday.  Still, I had a quiet day.  I did a bunch of chores that I’d been too tired to do yesterday, and I had my first shower since Thursday morning.

For breakfast, I had a small amount of salmon left over from Friday night’s dinner.  For lunch, I had a scrambled egg with a little extra egg white.  My sweetie bought me some peanut butter (for an easy protein fix), and I’ve found that putting a little on pieces of pretzel works very well as a snack.  So I’ve eaten pretty well today.

The friends who’d suggested stopping by yesterday called in the morning to say that they were trapped on the other side of town and wouldn’t be able to get here until after the marathon.  (They called again late in the afternoon to say that they still hadn’t reunited with the racers in their party, and would have to drive straight home.)  I did get a call from another out-of-town friend who has a meeting Tuesday afternoon and wondered if she might stop by in the morning.  (She’s a particularly close college friend.  Her daughter is my goddaughter, and I’ve described her as the mother of my children.) I told her I wouldn’t know until then, but that she should call.

I removed a good bit of the dressing over the port.  I’m supposed to let the stenstrips come off by themselves, but I don’t know what the stenstrips are, so I took off some obvious bulky stuff and left it at that.

Tomorrow I have a lot of administrative chores to handle.  They shouldn’t be arduous, but it’s annoying to have so many things on my list.  I also have a meeting at 8pm tomorrow, which is too late for me under normal circumstances.  I don’t know whether I’ll make it.

A quiet day, thank goodness.  I slept pretty well, but I was exhausted all morning, whether from the disease, the chemo, the week from hell, or the combination of all three.  I spent a little time at the computer, but for the most part I sat on the bed, reading and watching junk TV when I wasn’t talking to my brother or my sister.

I decided to try eating something every couple of hours.  I succeeded, but I wasn’t happy about it.  I felt pretty uncomfortable most of the day.  At about three o’clock I picked myself up by the scruff of my neck to go outside for a walk.  My sweetie came with me, and, very slowly, we walked for about half an hour.  When we got back I was exhausted, but felt less depleted than I had before the walk.  We had a message from an out-of-town friend who was around for the marathon and wanted to stop up, but there was no way I had the energy to see anyone at all.  (She’ll try again tomorrow and we’ll see.)

And that’s the nasty part of it.  There are lots of people I want to see, and I have so little strength for anything but going on.

Meanwhile, the Social Security Administration, in their wisdom, has sent me a Medicare card.  So now I’ll have to call them and figure out whether I have to use the new card or if I can stay with the card I’ve been using for sixteen months.

I was very uncomfortable by bedtime, as the meds had warn off.  Between the insults to my skin and the discomfort of the bandages (making it really hard for me to turn my neck), I slept poorly.  I was exhausted when I woke up, and very nervous.

I had almost no breakfast.  I spent some time doing the sort of thing I can do by telecommuting (and that doesn’t demand a great deal of focus).  And then  it was time to go to the hospital for my 10:30 appointment.  I should mention that I was still pretty uncomfortable when I woke up, but as the morning progressed, any soreness from the surgical processes just evaporated, leaving only the nasty bandages to annoy me.  That was a huge help.

Things went smoothly enough at the hospital.  I signed in, they took vitals, and had us wait for a bit in reception.  Then they took us to the infusion waiting area, and called me over from there.  I think it was about eleven when they actually had me in a chair, removed the pressure bandage from the port, and had me hooked up to the drip.

A lot of the staff had information for me.  First was the nurse in the infusion section, who gave me information about the drug, about cancer, about diets for cancer patients, and so on.  She said that my infusion would be short– about half an hour– but that I’d have so much information to digest that the communications would take longer than the actual treatment.  She asked if I wanted to speak to the social worker (yes) and the dietician (yes), and they came along in turn with pamphlets and suggestions and information.  One helpful item:  Because I’m getting chemo in the hospital, it’s covered by Medicare Part B rather than Part D.  So we’ll find out what this is going to amount to.

The dietitian had some very good ideas and suggestions for consuming more protein.  At the moment, I’m not having trouble with fats, but that may come, in which case I’ll have to exchange my cheese, ice cream, and avocado for leaner alternatives.

The timer on the drip went down to ten minutes remaining, and then, suddenly, back up to 33.  Apparently, something got kinked up and the drip didn’t flow smoothly.  So we were there for another half hour.

There is more, and if I decide any of it is worth adding I’ll come back and edit this, but I doubt it.  We stopped off to make specific appointments for my next two treatments, next Friday and the Friday following, and came home.

I checked in online very briefly, but I spent most of the afternoon asleep.  I hope that doesn’t mean I won’t sleep tonight.

Today was the port implant.  We’d been told to get to the hospital at 7:30 for a 7:45 appointment on the 4th floor.  We were (of course) a couple of minutes early, and nobody was around until about 8:00.  I had my book, my sweetie had his music, and we were pretty comfortable, but a little bored.

Eventually people started showing up.  I stripped above the waist and got into a gown.  Various people explained various parts of the procedure, which was fairly complicated.  The PA went over risks and got my consent.  They wheeled me into the room where they do the placement, and M left to do errands, figuring on coming back at 10:30.  So, they put a cap on me and took me into the procedure room, Eventually, they took my book and glasses and gave me a mask, and they started hooking up the IV connections, and then waited.  It seems that one of the machines they needed was in use.  They went to borrow one from a different section, and in the meantime the nurse figured I might as well have my book and my glasses back, so I wasn’t totally bored.  By the time they brought the borrowed machine in they had their own back.  So we didn’t start until I’d been lying there half an hour.  By now, I’d had an antibiotic drip, but they didn’t start the pain drugs until they were ready to go.

Then they took away the book and the glasses,  went over the affected areas a couple of times with disinfectants, put a sterile drape over me, and went to work.  They get into the vein in my neck and drop a catheter down to the vena cava.  Then (if I have the order right) they put in the port, stitch it down, test it in both directions, and either correct or call it a placement.  In my case they called it a placement.  Even with the delay it was just an hour after they’d wheeled me in that they wheeled me back.  M was there waiting for me.  He’d brought small bites of cheese.  They gave me cookies and cranberry juice.  (He got apple juice, too.)

And then we waited through two more blood pressures and they gave me a bunch of followup instructions (sex is not, apparently forbidden, but the nurse thought I probably shouldn’t).  We were free to go.

We stopped upstairs in the oncology unit to deliver stool samples necessary to qualify me for the protocol, but I learned that my clotting time was still outside the margin (although by less than before), so I won’t be doing it.  That means I don’t stand a chance of getting the second drug, but it also means that the amount of time I have to spend at the unit being poked and prodded will be considerably less.  You win some and you lose some.

We got home by about 11:30.  I was okay for a while, but then I lost the bits of food I’d eaten.  (There was morphine in the drip, they told me, so I’d been afraid that would happen.  I don’t like opiates.)  Now the drugs have worn off and, between the bandages that seem to be tying my head into a strange position and the wound, which isn’t horrible but it’s not nice either, I’m not comfortable.

We had no trouble getting to the imaging center by 8:00.  I’d had nothing to eat or drink since 11:50. (I was officially NPO after midnight, and I happened to wake up thirsty, so I took some water).  They took me inside by 8:15.  The beginning of the scan was easy, and there was no contrast so I didn’t have to drink nasty barium stuff and they didn’t give me iodine intravenously.  They were doing my head and my chest.  The chest part was pretty unpleasant because of the position of my arms.  They were locked behind my head, but my head was resting on a cradle that was part of the machine, so my hands were under the support for that cradle.  The position was awful, and it felt like I had to hold it forever.  When they finally took me out of the machine I needed the tech to help me release my right arm.

But we were done by 8:45 and at the hospital (repeat of the blood draw) by nine.  We had to sign in and wait to be called, but it wasn’t long.  It didn’t seem to me that they were all that sure what test(s) they were supposed to do.  I haven’t heard from the oncologist, so I don’t know about my clotting time (and eligibility for the protocol) yet.

Meantime, I still hadn’t eaten.  My sweetie had brought along one of those nutritional supplement drinks, but I dislike them well enough to figure that, as we were headed home directly, I’d just wait for real food at home.  So that’s what I did.  My legs felt like lead on the way home, but I did feel a lot stronger once I’d eaten.

Meanwhile I was supposed to help a neighbor learn how to handle a mailing list I’ve been running for the co-op, but I was far too depleted to do that, so I just let her know that I couldn’t make it.  (I’d warned her that they’d thrown more tests at me, and that this might happen.)

I rested for a bit and then actually did some work.  I can’t say I’m the world’s most efficient employee at this stage, but there are things I can do, and I’m trying to keep up with them.

So tomorrow is port placement, very early.  They say to shower before because you can’t for three days afterwards.  No vigorous aerobic exercise either.  I wonder whether that includes sex.

Today was relatively quiet.  I called another dear friend whose response was beyond generous in every way.  I did some work, got some medical and other paperwork together, managed to pick up some split pea soup for lunch at one of the markets near me.  (They also had corn bread, and that would have been wonderful if it hadn’t tasted just slightly stale.  Of course, by the time I found that out I was not in the neighborhood.)  I stopped at the bank and went into the office.

I managed to accomplish a few things before I realized I was very tired and left at about three.  (I have a dinner date tonight with one of my dearest Internet friends– you know, those imaginary people who live in the computer and whom you almost never see.  It will be an early night, but I want to be awake enough to enjoy her company.)

I was describing the morning’s phone call to my sweetie when the phone rang.  It was Dr. S, the oncologist, saying that they’d like to repeat one of the blood tests (clotting time) because my score came back slightly outside the limits for the study, and that would make me ineligible.  Because the difference was within the margin of error for the test, he thought repeating it might make it worth while.  So after tomorrow’s CAT scan I’ll stop off at the hospital and let them have a bit more of my blood.  At least the facilities are relatively close together.  The CAT scan shouldn’t take too long, and the blood draw is just that– not an actual visit, so that should also be pretty quick.

I can’t say I’m pleased to find out that I might not qualify for the protocol, but whatever happens will happen.  In any case, I might not have got the second drug; that’s a coin toss.