It’s been a busy and tiring week setting up with Hospice.  Everybody is pleasant and helpful, and is very clear about why they’re calling, but it makes lots of phone calls.  We have acquired a shower chair, an elevated seat for the toilet (with arms) for the toilet, an emergency medical kit (to be stored in the refrigerator), a wheelcair, a walker, and a mandatory oxygen system that we aren’t sure yet how to use.

But today’s adventure was a visit from the bedbug team.  An apartment below us had an a “incident”, so the surrounding apartments needed to be checked. Fortunately, the dog found nothing interesting here, but it was a rough time.

Happy Thanksgiving!  I don’t have much energy, so I don’t know how much time I’ll spend here.  I love you all, and i’ll keep up as I can.

Today we met the Hospice intake nurse.  She interviewed us at considerable length, and requisitioned an assortment of gear (walker, wheelchair) that should prove useful.

It was a long and tiring conversation, and it was followed by a number of phone calls, none particularly arduous but cumulatively difficult.

I’ve had a lot of support (as you can see from the comments), some of it in direct email.  I don’t promise to answer you all; even posting this is an effort.

Tomorrow we should meet our case manager and have the gear delivered. At least we’re under way.  Happy Thanksgiving.

My liver is enlarged again.  I’m weak as a kitten.  The FOLFIRI seems to have failed.  We’re going to Hospice.  A nurse is coming tomorrow morning to discuss options.

I’m not surprised. I’ve felt myself slipping the last couple of weeks.  In part, I’m relieved:  No more infusions, pumps, and so on– but we know that the tumor is very aggressive, so I have no idea how much time I’m likely to have.

At the moment I have no pain, but my entire abdominal cavity feels uncomfortable in a stomach-achy way.  Still, no pain is good.  One day at a time.  Happy Thanksgiving.

I did very little all morning, really.  I didn’t even have my normal breakfast, just half a bottle of extra-protein Boost (which I finished later in the day).  But when we put the computer on the bed I actually did a bunch of things– catching up and recording some data that I couldn’t do until I had things set on this machine.

I still need to get back over to my desk and struggle with the cabling for the firewire disks, but there isn’t an immediate rush to get that finished.

I’m also feeling a little more awake now than I was before I started working on the computer, and that suggests to me that there is a component of depression in my general lack of desire to do anything.  Let’s see what happens tomorrow.  The scariest thing is how little I’m eating.  That’s not helping my energy level much either.

Well, I did a lot today, and most of it was migrating my data and configuring the laptop.  That did not go well.  One significant issue with my mini is that it simply goes dark now and then.  It’s weird.  If it’s still on in the morning when I get up, it’s pretty much guaranteed to go down while I’m in the middle of something sensitive, so I’ve learned to restart it quickly.  When I do that, it’s generally good to go for another day.  It often goes down overnight, in which case I just restart it in the morning.  But if I don’t catch it in time and it dies on my while I’m using it, I can’ simply restart it.  I have to give it five to ten minutes to recover or it will simply die again.

It was down this morning when I got up.  Rather than bringing it up normally, I wasted twenty minutes and more physical strength than I could afford digging around in my (connected) firewire cables for the 800-400 before I gave up and stole the one from my sweetie’s Time Machine connection.  Then I brought the mini up in target mode and ran migration assistant.  With (according to the screen) “less than a minute to go” the mini went down.  I decided (eventually) to take a chance and just bring up the laptop, where I discovered, to my pleasure, that the migration appeared to have worked sufficiently to be of use.

Of course, I had to move stuff around and change some permissions, and then I needed to get the windows group set up.  I have now done that, read mail on two accounts, and am ready to collapse.

Happy Thanksgiving!

It’s rough.  I did a bunch of work today– cleared a lot of stuff out of the way (but I still have far too long a ways to go).  I slept badly again, but maybe a little better than the other night.  But now everything hurts.  My neck is now stiff and painful on the other side; really inconvenient.  I’m constipated, and that’s making me uncomfortable.  And I have so little energy that getting myself from the bedroom to the bathroom is a real effort.

Meanwhile, today’s mail included a love St. Pat’s Day package (more lavender!) from my cousin in Maine.  I have many notes and gifts and beautiful cards (the cards themselves are gifts) from friends and family that I’m afraid I’ll neglect to acknowledge.  I’m spending very little time on the computer these days; still haven’t done the migration.

But here I am, and I did complete and order my health care proxy and living will.  One day at a time.  Happy Thanksgiving.

I got very little sleep last night.  Everything hurt– muscles, joints– head to toe.

I was exhausted and depleted all day.  I still haven’t migrated my data over, but I did wake up sufficiently in the afternoon to disconnect the external hard drives, so all I have to do is bring the machine down, hitch the two machines together, and go with it.  All I need is the strength to get the machines together, and tomorrow, my sweetie (who was at the beach today) will be around more to help.

I don’t think I mentioned yesterday that my sweetie left his tote bag (the only one we were carrying) in the cab.  He’s submitted a report to the TLC, and I hope he can retrieve it.  There wasn’t much in there, but I was enjoying The Time Traveler’s Wife, and now Clare’s story is as lot to me as Henry often is to her.

It bothers me to be so weak and tired, but I did really knock myself out yesterday, and perhaps if I get some sleep tonight I’ll do better tomorrow.  In any case, here I am.  One day at a time.  Happy Thanksgiving.

Today has been exhaustive, but very productive.  This morning I finished the software updates for the new computer and worked some more on my ongoing work project.  I had a phone call from a dear friend.  Much as I enjoyed hearing the sound of her voice, I was feeling very weak, and trying to use all the strength I had for the work I was doing.  (Please, my dear friends, don’t call me– especially in the morning.  Mornings are hard.If I haven’t called you, it’s not because I wouldn’t like to talk; it’s because I haven’t had the strength.)

This afternoon we went over to the East Side–way east– for our consultation. That was excellent.  Perhaps the most helpful item (it’s hard to tell yet) was an insight that I had this morning:  A lot of the time, I’m lying there trying to push myself to take the next step an thinking “I can’t”, but it’s more like “I don’t really want to bother making the effort.”  I was smart enough to mention this to my sweetie (the retired clinical social worker) while we were waiting to see the doctor, and he said “That could be depression”.  Well, yes, of course it can.  And then we learned from the doctor that pancreatic cancer often causes depression for chemical reasons (as well as pragmatic ones).  So Monday we will talk to Dr. S about this.

She also mentioned a number of possible alternatives both for tracking the disease (tumor marker) and for potential treatment going forward should the FOLFIRI fail.  I’m not entirely sure that these weren’t mentioned initially, but we should check.

The best part of the consultation was that the doctor felt that I was still doing very well, even though, from my perspective, it seems doubtful.  The worst (and only bad) part of the experience was trying to get a cab home.  After waiting at the hospital for nearly 45 minutes with no luck at all, we managed to walk a long block to First Avenue, where we waited at a bus stop– but my sweetie found us a cab, and finally we were home.

I’m dead beat.  At least I’m stretched out on my bed, my new laptop on my new bed tray, and not trying to sit at my desk.  Happy Thanksgiving.

Today was a little exciting.  I managed to be more productive this morning than I’ve been since we got back from Florida.  That knocked me out, but I recovered well enough to begin setting up my new computer (refurb MacBook Pro, which gives me a 15″ screen and a DVD drive.  (The Air refurbs were smaller, and I’m definitely appreciating the larger size.)

Anyhow, I still have to migrate everything over and install Rosetta, and I’ll see how much of that I can get done tomorrow before my appointment at Weill Cornell.  But I did get a lot done, and yes, I’m tired, but it’s okay.  Day by day.  Happy Thanksgiving.

Today was rough, not because I felt worse than usual– I don’t– but because my lack of stamina worries my sweetie, who keeps trying to find ways to help.  (“Maybe if you ate a little more…”) I would eat more if I could.  I watch the Food Channel and the Cooking Channel all day long, drooling over the rich conconctions demonstrated.  I did remind us both that it’s still only Monday, and I didn’t come off the pump until Thursday, so we’ll see what tomorrow brings.

And, by the way, I worked longer this morning than I was able to do at all last week.

So here we are.  One day at a a time.  Happy Thanksgiving.