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.

Never a dull moment.  Early yesterday morning, not long after I woke up, I felt a kind of weakness in my right shin muscle.  I went to flex my foot and found that I could point my toe easily enough, but flexing my foot upward just wasn’t happening.  Note that yesterday was Sunday.  I decided to see what happened over the course of the day and call Dr. B in the morning if it was still weak.

It was, and I did, and he wanted an MRI of the brain, which he scheduled hurriedly and at a location unfamiliar to me.  I found it after considerable running around and being in the wrong place.  (I thought he’d said “St. Luke’s” but he said an imaging center across the street from St. Luke’s.”   Anyhow, we found it and I had the scan.

But that meant I was later than I’d figured on signing the papers for the experimental protocol.  We went right down to Roosevelt Hospital, and sat for about twenty minutes because we didn’t realize we were supposed to interrupt the guy with the papers.  He was very apologetic, got the coordinator of the study (if that’s what the position actually is) to bring me the papers, explain the protocol, and let us read the papers and decide whether to sign.

The papers are very complicated, because you can either be in the two-drug arm of the study or the one-drug arm, and _where_ you are in either arm makes a difference too. So you’re reading four sets of instructions, only one of which will actually apply to you.  They’re similar in many ways, but not identical.

Then it transpired that they needed some additional blood work, a urine specimen, an EKG, a CAT scan (because the one I just had didn’t include the chest or the head), and a test for fecal occult blood.  (Oh, goodie!)  So we were there for another hour getting the test done, that they would do in their lab, and we hadn’t really had anything to eat since the morning.  My sweetie (even hungrier than I) came to the rescue by picking something up in the cafeteria.

When we were through I went to the office very briefly, took care of a couple of things, an left.

I came home to learn that I’m okay for social security benefits but they’re deducting Medicare from the retroactive payments even though I’ve been paying my own Medicare since July 2010.  I’ll have to challenge that, with whatever strength I can find.

The CAT scan is scheduled for early Wednesday morning.  We haven’t heard yet about today’s MRI.

It’s all much too exciting.

As you can see, I spent yesterday and a chunk of today making this blog available, so that anyone who wants to can see what’s been happening without my having to update a lot of folks individually.

Someone asked about the picture:  It’s the Seal Rocks, just off San Francisco, near the Sutro Baths.  Most years we’ve spent the last week in October at Seal Rock Inn, where this is one of our standard views.  We didn’t get to go this year, so I put up the picture as a general lament.

I think I mentioned that one of my nieces is moving to Arizona next weekend, and I really wanted to see her before she left.  We’d planned to have dinner together last night, but there was a blizzard in the area, and the New Jersey contingent would have had a hard time making their way in, so we rescheduled for this afternoon.  Today was clear and crisp and amazingly beautiful.  It was a lovely reunion.

It is nasty and raw.  There is a nor’easter in the forecast.  I am not thrilled about traveling to Queens to meet my family, but I figure I’ll do it nonetheless.

I spend most of the day workout out the format of this blog and adding entries. Now that I’m pretty much up to date, I can just go forward with it, a day at a time.  I will psych myself up for making the information more public, now that I can refer people here.  (Note to self:  I must do something about WP’s default pictures.  Bleah.)

I call one of my friends, who is horrified to think that I’m going out to Queens in this storm.  Soon afterwards, my sister calls to say they’re postponing until Sunday.  She’ll let me know details when things are clarified.  I call my friend back to reassure her, and we laugh.

We call my parents in the late afternoon to say that we will, after all, be home when it’s time for their evening call.  Mom says that Dad has been waiting since 11:30 (which used to be our time to call them) for the phone to ring.  He calls in the evening to complain that we were so late calling.

I’m exhausted.  I got through the usual morning work routine (the early telecommute part).  I call MSK to ask about an appointment.  The nurse, who is magnificently professional in a sympathetic way, says that their pancreatic unit has lost some doctors, with the result that they are filled up for more than a month.  She advises me to proceed with the treatment as planned, which includes standard drug in any case.  Then, she says, find out when your first scan will be.  Once I know that, I should call MSK to arrange for an appointment a few days following.  They will be able to look at the scan and provide a good evaluation and a second opinion.  This strikes me as a reasonable approach, and I thank her.

I do my (abbreviated, less intense) workout.  As I am leaving, a neighbor comes in, notices how much weight I’ve lost and asks if something is wrong.  I can’t lie at this point, so I just nod and signal “no more” and leave.  I will tell her soon.

I drop a note to a neighbor who has worked on  the web page with me to ask if she’s around and has time to talk in the next couple of days.  I will call on her at her apartment this evening.

I go into the office.  Another senior staffer and I draft a “help wanted” ad to post on Panix.  (We will probably have to post this elsewhere, and I don’t know how much energy I will have to help in the selection process.)  I am falling asleep, but I manage to last until three, and then I start to leave.  My boss calls when I have my coat on.  We talk briefly and I say I’ll try to call him later from home.

I get home, take a nap (which helps a lot) and call my boss back.  We covered most of what we needed to already, but I wanted to make sure.

After supper, I stop down to see my neighbor, who is a lovely, warm person and immediately thinks in terms of practical support for us.  We discuss the practical items.  I tell her I’m not yet ready for the building grapevine to pick this up, and she says she’ll talk to our hematologist friend (who already knows).

I am overwhelmed at the warmth and support of my friends.

I have set up and maintained a web page for our co-op.  I also maintain the database for membership in our fitness center.  I will have to pass these chores along to someone else.  (The web page is going to be tricky, because I don’t use any GUI tools for it; I just write the code into the files.  The database shouldn’t be a problem.)

One of my neighbors, a hematologist, is on the co-op board and also on the fitness committee.  I’m not yet ready to spread the word through the building, so I decide to approach him individually.  He is more than helpful.  He starts by reminding me that I’m not just a patient, or a webmistress, or whatever.  I’m a friend, and the people I’ve been working with will treat me like friends.  He also asks about the oncologist I’m seeing and the ones whose names I got from my brother, and says he’ll be happy to see what he can find out about them and who he would recommend.  I thank him.

My sweetie comes with me  to see the oncologist, Dr. S.  It’s a dreary day– wet and raw.  We find our way to the unit and fill out the initial paperwork.  We wait.  Eventually they take my vitals, and we wait some more.  Finally, Dr. S’s nurse gets us, apologizing for the delay. (They had a meeting, and it’s thrown their schedule off.)  She takes a very comprehensive history.  When she asks about cancer in the family, I have a lot of information for her. I doubt that 5% of patients know as much about their aunts, uncles, and cousins medical histories as I do.

Eventually Dr. S is available.  He is somewhat avuncular, a little too much for my taste, but if he errs on one side or the other, that’s the right way to go.  He asks what I know about my situation. I tell him.  He confirms it.  There is no cure, zero per cent.  That, of course, is the bad news, but it’s not news.  He examines me and we go back to the consulting area.

The standard treatment, he says, is Gemzar, which is relatively mild in its side effects for a chemo drug.  They have a very new experimental protocol in place, combining Gemzar with another drug (supposedly also mild in its side effects).  The protocol is randomized, so I wouldn’t necessarily get the second drug, but I’d be getting the Gemzar in any case, and he says that I’m in “such great shape” (yes, his very words!) that I’d be an excellent candidate for the protocol– if they can put the paperwork together quickly enough to make it happen.

The point is that this looks aggressive, and we want to start as soon as possible.  I will have a port inserted (to allow infusion and blood draws without constant searching for veins), and he wants the first treatment to start within ten days.  He makes some calls, sets things up.  We go to the scheduling office.

I will have the port inserted next Thursday, November 3, and my first treatment on Friday, November 4.  It is mid-afternoon when we leave, going out into the bleak, wet day.

I send email to more of my friends.  My sister calls to find out what happened.  My parents call.  I am very tired, but I don’t sleep well.

I have told my sister that I’d love to see the kids, especially the youngest, who just had a birthday and is about to move to Arizona.  They are going to meet at a modest restaurant in Queens Saturday evening, and we will join them there.  I am relieved to think I will see my niece before she goes.

I have been telecommuting on Wednesdays, and I am able to go through a lot of accumulated papers and dispose of them.  This helps, although it tires me out.

I also begin the process of emailing those friends who should hear it from me before it hits the grapevine.  One friend, who lives within driving range of my parents, offers to help them with computer problems and other such stuff.  Others arrange to be in the area soon so we can, at least exchange hugs.  I can’t do too much of this at one time, and I want to have some semi-public update arrangement in place before I put the word out more generally.  That way I can refer people here, to this blog, to cut down on individual email and phone calls.  I love my friends, but my sweetie and I don’t have so much energy right now.

Early this afternoon I have to call Dr. B for information about the path report.  I go into the office.  Our postponed meeting has been rescheduled for today.  I call Dr. B, who is with a patient and will call back.  I leave my number, mention that I’ll be there until 4:30, and go into the meeting.  It is clear that we need to hire somebody, but not entirely clear at what level.  We accomplish a number of other small items.

Dr. B hasn’t called by the time I leave.  When I get home, there is email from a colleague that my extension just rang and went to voicemail.  I call Dr. B.  There are no surprises; it’s malignant, and the preliminary report suggests that it started at the pancreas, but that needs a couple of further test results for confirmation.  Dr B. asks when I will see the oncologist; I tell him Thursday.

I report this to my parents in their nightly call.  They ask about telling the rest of the family.  I say I’m not quite ready yet, and there is one cousin I want to speak to directly first, but I’ll let them know.

Meanwhile, there are friends I want to tell, but there’s an order to it, and I’ve been having trouble reaching the first one on the list.  This is someone who’s more like a cousin than a friend.  Our fathers were boyhood friends.  I’ve known her extended family, and she’s known mine.  We have made a date for me to call her at home this afternoon at about 5:30.

I get impatient, and try at 5:15.  As it happens, this is a good thing.  She is on her way out, and I have to push to make her accept that I need to talk to her now.  She hears the news and berates herself for having tried to put off the conversation.  (How could she have known?  When she did know, she listened, and was supportive and loving and helpful.  That’s what counts.)

Now that she knows, I can call the next friend on the list, someone I met through my cousin-friend and whose husband is a friend of my sweetie’s.  This is the call that I’ve wanted to make, so that my sweetie can talk to his friend (who, incidentally, has leukemia and is currently suffering from pneumonia) when he needs to.

And then I call another friend who is part of the cousin-friend network.

And I am tired, but I have started things in motion.

It’s Monday.  I have no procedures scheduled.  I have nothing scheduled this week until the oncologist on Thursday.  I go to the office, finish clearing out paperwork and so on.  I still have some personal items in the office, but nothing of real value.  If I don’t manage to retrieve any of what’s there, it will be okay.