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.

My brother has forwarded the names of three oncologists at Memorial Sloan- Kettering.  I thank him.

My plan is to proceed with the referral I have to Dr. S at Roosevelt Hospital, but, when I have the path report, to call MSK to see if I can set up a consultation there.

I was supposed to meet with my boss and one of my colleagues to discuss how my job would be taken over, but my boss calls to cancel because he’s caught a bug from his son and doesn’t want to infect me.

I do a workout, but not a strenuous one, and a lot of reading and junk television.

It’s family day.  My brother, like me, is an early riser.  I call him at eight o’clock, as if it were any other Saturday, and he asks me how I am.  I make sure he’s sitting down before I tell him, and I feel the weight of it hit him and hurt him.  I want to apologize– I do apologize– for having such bad news.  We cry together, over the phone.  He has practical questions, many of which I can’t yet answer, and offers to find out from the oncologist who worked with his sweetie (and who had previously worked at Memorial Sloan-Kettering) who on staff there she would recommend.  I thank him.

My sister calls me, also as usual.  She asks how I am and I ask her whether anyone has said anything to her.  Nobody has, so I have to tell her, too.  She, at least, is not alone; she has a husband and three adult children.  The oldest just got engaged; the youngest is on the point of moving to Arizona for a year.  The middle one is working in the area.  My sister is shocked and upset, but not hurt in quite the way my brother has been hurt.

I am so sorry for raining on everyone’s parade.

When I talk to my mother I mention this to her.  I much prefer to make people happy, I tell her.  She says that I’m usually pretty good at that, but, she concedes, not so much this week.

I am infinitely lucky in my family.