I managed to do some work this morning, but I was exhausted by noon and spent most of the time offline.  I did eat well, but I didn’t have much energy.  I’ll be glad to start the new drug, and I hope it helps.

In the afternoon I did a little organizing (in between rests).  I looked at flights (which I need to discuss with my sweetie before we book; it looks like Newark has better options than JFK in both directions, but we really don’t like EWR.  (Maybe I’ll ask for a wheelchair.)

Anyhow, late in the afternoon I felt a bit more energetic (well, I’d been resting some of the time), but I suddenly realized that my right ankle was refusing to flext, the way it did just before Halloween.  It was really not flexing at all, but I started exercising it a bit and now it’s flexing a little.

Meantime, I have to return a phone call that came in yesterday while we were at the hospital (potential visitors in March), and I have to coordinate this with other schedules.  I’m not counting on Hawaii, but I wouldn’t turn it down if I’m in shape to take the trip.

One day at a time.  Happy Thanksgiving.  (My mother has begun to sign off on her email with “HT”.)

Scan day.  The news is not great, but neither is it dire.  It appears that there’s an increase in the cancer, but it’s not a huge increase, and the tumor activity is still confined to the areas where it was originally discovered.

This is vaguer than it might be because the report from the scan had only just reached the hospital by the time of my appointment, so the oncologist was reading the report during my appointment, and had not himself seen the images yet.  (So, of course, I wasn’t able to look at them.)

He believes that the Gemzar is no longer effective.  He’s confident that it was effective initially, but the effectiveness stops eventually.  (I knew this.  I didn’t know whether the effectiveness was likely to taper off or to stop suddenly, and it’s apparently pretty suddenly.)  He said there are two options:
A. Do nothing
B. Try another (somewhat harsher, perhaps less effective) drug (with a less convenient protocol)
He said he recommends doing nothing to patients who don’t feel well, whose vitality and activities are limited, and so on.  He wants me to start a new “drug” (actually, three different drugs and a vitamin: it’s called FOLFIRI (I’m not sure whether or not that’s actually an acronym).  It’s administered every other week; a three hour infusion after which I leave with a pump still connected (there’s a small bottle that I carry in a waist pouch); I have to return to hospital forty-eight hours later to have the pump disconnected.  Because the infusion is so much longer, it’s harder to find a chair for me, and the earliest appointment I could get was for next Monday.  That’s February 6.  So if you’re following closely you’ll realize that the second infusion, fourteen days later, would be February 20, at which time I was hoping to be back in Florida. Dr. S. said to book the trip and we’d schedule around it.

I spent some time staring at a calendar, and I’ve pretty much decided that I’ll stick to the schedule and go to florida after the disconnection on Wednesday, 2/22.  We’ll just aim to celebrate the weekend afterward.

I wasn’t really surprised at what he said.  I was pretty sure I was no longer improving.  I have less energy than I had at (official) Thanksgiving, but enough energy to lead an almost normal life.  The pain under my ribs is a little sharper and a bit more persistent than it was before Christmas, but it’s still intermittent and very tolerable.  I’d hoped I was holding my own, but I’m not doing badly.  Of course, it’s still to be seen how well I tolerate the new drug, and how effective it is for me.

And we will set up a consultation for a second opinion.  Dr. S mentioned that other doctors will sometimes recommend more aggressive drugs, and those are more toxic.  He gave me a rundown of the most common, and why he’s going with the one he’s chosen, just so I’m prepared to listen to another specialist in an informed way.

After the consultation, we came home, and had lunch.  I did some work, had a rest, and now I’m back.  This is a little early for me, but I’d rather enter it now.  My sweetie has his Gilda’s Club meeting tonight; I’m glad of that– and of much else.  Happy Thanksgiving.

I kept busy today.  In the morning I did some work online for a couple of hours.  Then I did the hand laundry and went outside into relatively mild sunshine to run a couple of errands.  I went to the bank, walked from there to a drug store where I picked up a new, inexpensive electric toothbrush, took the subway to Origins, where the only lavender bath product they had was a body wash (not what I wanted) heavily infused with vanilla (which also didn’t please me a lot).  So I rode the subway home (gotta love the unlimited metro cards).

By then it was time to eat something, so I took some cold cereal and read the paper.  Then I decided to begin going through all the photos that I’ve scanned, and that occupied me, on and off, all day.  (I haven’t finished yet.)

I did get a lot done, and it distracted me from tomorrow.

Happy Thanksgiving.

Today I spent quietly.  I did some work early, and then my brother called, as usual; my sister called after him.  (These calls are a Saturday ritualthat I enjoy wholeheartedly.)

I wrote checks to pay a couple of bills, recorded my latest paycheck (which I still have to take to the bank; maybe tomorrow), did some more work online, and rested some.  I treated myself to a lavender soak, read the newspaper, and visited with a friend and neighbor I hadn’t seen since the trip.

By the time I got back to our apartment it was supper time, and I’ve just finished supper.

I’m definitely nervous about Monday, but Monday will come in due time, so I might as well make up my mind to wait.

Happy Thanksgiving.

Scan day.  We left at about 8:30, and got to the facility at just about 8:45, which is exactly what I was aiming for, as my appointment was at 9.  They gave me forms to fill out (mostly about allergies to contrast media) and some insurance stuff.  And then I sat with my sweetie until about 9:30, when one of the techs took me downstairs.  I had brought a book with me, but I left it in my tote bag, and I left my pocketbook in the care of my sweetie.

As I went downstairs, I told the accompanying tech that I had no idea what to expect, but she was leaving it for the next person in line to tell me.  And he was really good about it.  He checked my blood sugar (because he was going to inject me with sugar with a radioactive isotope, and he wanted to be sure that the activity picked up by the scan was from his sugar, not from what was already in my blood).  He weighed me– stable.  (Yay!)  He gave me a dreadful tasting thing to drink (contrast medium, “berry” flavored, but it wasn’t).  He collected the sugar stuff from a secure room (I saw it later, with the “nuclear” decal on the door) and injected it via the intravenous.   Then he showed me to a one-person waiting room (because I was radioactive), saying that in fifteen minutes he’d move me to a more comfortable room (better seating, and warmer).

The warmer was really an issue.  It was very cold in the room where I was waiting.  My book was upstairs, out of reach.  The magazine rack contained a (very beaten up) National Geographic and a (somewhat less decrepit) Vanity Fair. I picked up the latter and leafed through it slowly.  I really wished someone had thought to mention that I’d be waiting an hour, and I might want to bring a book.  I had a lightweight fleece sweater with me, but I couldn’t really put it on, because I still had the intravenous rig hanging from my left arm.

I was well chilled by the time I was moved into the warmer and more comfortable room, and I was still somewhat chilled when the interminable hour was up and I was taken for the actual scan.  First I had to empty my bladder and remove my bra.  (There was a bathroom available for the purpose.  The scan wasn’t what I’d call fun, but it wasn’t all that bad.  The worst part was something I’d forgotten from my CAT scan a few months ago:  You’re lying supine, and have to extend your arms over your head and hold them there, and there isn’t any support for them.  But this part didn’t take very long.  The rest of it was just a matter of lying their patiently.  Eventually the tech used the intravenous rig to give me the other contrast medium (which he said would warm me, but it didn’t, except very mildly, at the back of my throat).

And then I was done.  I went to the bathroom to put my bra back on, and went back upstairs to join my husband.  I had a bottle of Boost in my tote bag, and I drank it immediately, and it helped, but I was definitely looking forward to getting home and having real food– including carbs, like the Irish soda bread our neighbor brought over last night.

In the event, I think I ate too much, because I was very uncomfortable.  So I didn’t really get back to work as I’d planned.  I stretched out on the bed and watched junk television. Eventually, my digestive discomfort eased, but then I started feeling a little feverish.  I’ve been warned to get myself to the ER if my temperature goes over 100.5 deg. F, so I was checking it.  I decided to be very cautious about supper, and just had my usual breakfast (scrambled egg and toast), but by the time I was ready to eat  the sick feeling had passed off and I felt much better.

So that’s today.  Now we wait until Monday to find out what they saw inside me.  (I would love to be able to see the actual images, just out of curiosity.)

All in all, I’d rather be back in Florida, enjoying warm weather and playing duets with Mom, but this was a necessity, and we’ve done it.  Happy Thanksgiving!

Now we really are home.  We started the day as usual– I’m at the computer shortly after 5:30 while my sweetie goes into the kitchen to prepare breakfast.  Today I’m not supposed to stick to a very low-carb diet, so instead of toast with my scrambled egg+white I had a little bit of broccoli (left over from last night’s supper).  That worked fine.

I didn’t sleep all that well last night, so I definitely missed the “Boost” that I normally drink mid-morning.  I had some cheese, but it isn’t very convenient to eat cheese without bread or crackers, so I didn’t have much (i.e. not enough).  No sugar means it’s a little hard to get quick energy.

I wanted to pick up the sheepskin coat I left to be cleaned and repaired in December.  My sweetie came with us.  I had thought to wear the coat (as an easy way of carrying it) and carrying fleece, but rain was forecast, and I didn’t want to get the coat dirty right away.  But that meant contriving a carrying arrangement, because I didn’t know what to expect from the shop.  As it happens, they were all prepared.  They’d done a magnificent job on the coat and I was delighted.

I’d originally thought of spending a couple of hours in the office, but I was too tired and too hungry.  We stopped in briefly, but left after just a few minutes. In the elevator we ran into a neighbor that I like a lot.  I thought that she’d heard about the diagnosis (because she’s on a committee with me, and I told the committee), but I guess she wasn’t there at the time.  I was complaining about the low carb diet, and she asked why, and it came as a shock to her, and I felt very sorry about that.  She sent me a lovely note in email, and I sent her a note with the blog address.  It’s hard to tell who knows and who doesn’t, and I don’t want to appear to folks who do know as if I’m trying to hide what’s going on.  (‘Tis a puzzlement.)

I immediately took another piece of cheese and a small slice of the ripe avocado my sweetie had found for me, and I put a couple of eggs on to cook hard.  Somewhat to my surprise, I completely finished my lunch:  the two eggs, more avocado, some olives, and a little mayonnaise chopped into a salad.  (Two eggs– wow!)

Then I read the paper and took a nap for a while.  It wasn’t until about four o’clock that I was ready to get back to the computer.  But now I do feel a bit peppier.  At least the scan is pretty early tomorrow, and I’ll bring a bottle of Boost with me so I can eat something afterward.

One day at a time.  Happy Thanksiving.

The flight and its preliminaries were easy.  We took off a few minutes early and actually landed (as in “were ready to disembark”, not just as in “were on the ground”) twenty-five minutes before we were scheduled to.  We were in a cab and en route by the time we were supposed to have landed.  The weather in NY was mild for this time of year; no hat or gloves needed.  Our wait for a cab wasn’t very long.  There was some traffic, but at this point I’ve called my parents to assure them of our safe and timely arrival, listened to our phone messages (mostly junk), gone through the mail (not quite ditto, but not as dreadful a load as we expected in late January).

So here we are.  I’ve had plenty of energy today, thank goodness.  I’m sorry to have left my parents and the warmth (both emotional and climatic) and sunshine, but I have promises to keep, not to mention all the distance I have to travel before I sleep.

Happy Thanksgiving, yet again.

Well, we leave Florida today to return to the colder North.  It’s been wonderful to take a walk before sunrise without bundling up for freezing temperatures, to swim outdoors, and to be with my parents, who are so warm and loving and supportive– without making me feel like a child– that I can’t express my gratitude to them and to whatever made me so lucky to have them.  Happy Thanksgiving.

Yesterday was a particularly good day.  (I told Mom I thought it was because we’d played duets the evening before.  By the way, I’ve updated yesterday’s entry to amplify that.)  After a couple of days of sluggishness I seem to have recovered my inner dynamo.  We took a slightly longer walk than we’d been taken, and did our standard swim.  Then I started scanning.

My parents have lots of photo albums. Some of them are from the last twenty years or so, and include the people here.  Some of them are the pictures they took of us across the years.  And some of the albums are the ones Mom got from her mother, with really old photos of the family.  I scanned over 70 pictures.

I was hungrier for my snacks and my lunch than I’d been in days.  After lunch, my sweetie and I went with Mom to visit their best friends here, another retired doctor from our old home town in northern New York, and we had a very pleasant visit with them.

When we got back, I helped Dad start entering data into TurboTax (which he doesn’t really use; he has all of his information in spreadsheets, but he likes having the forms and the instructions).

We decided to order takeout for dinner. While we were waiting for it to be time to call, I played more duets with Mom, and we both enjoyed that a lot.

As to dinner, well, Mom and Dad found their  ”mild” wings were drenched in a sauce that was too hot for their comfort; my “hot” wings came with sauce on the side, so we traded some.  My sweetie had a vegetarian pizza.

And that was yesterday.  I don’t know where the energy came from, but today also seems to be a good day, so yes, happy Thanksgiving!

Yesterday I was exhausted most of the day.  I took a nap after my swim, didn’t go to the beach, read, slept, and read some more.  I printed some crossword puzzles from the NY Times and did a few of them.  I had a light lunch.

After lunch, my parents went out to do errands, and I started scanning photos from their album.  They came back just as I’d scanned a photo of my father’s grandmother (whom I knew) with Dad’s baby sister (deceased) holding my brother as an infant, and Dad was thrilled.  So I asked him if he wanted me to leave those pictures on his computer, and of course he said yes.  Mom asked me what I was doing with them, and I told her I was going to put them on my computer to rotate through the screensaver (and maybe the wallpaper).  It’s great to have them.

I felt draggy all the way through supper, but a little better as the day wore on, and when Mom started to play the piano I took my flute out and we played show tunes together.  It’s a far cry from the Bach sonatas, but we still love playing together, and even as we stumble through the show tunes, we do the little things together:  phrasing, shading, and so on.  I got tired, but it was well worth it.

At bedtime, my back was very achy, and my sweetie suggested that I take naproxin for it, and I did.  I slept well and woke up energized.  (I don’t know whether it was the naproxin or just that I’d finally had enough sleep.)

Anyhow, this is our last day; we leave tomorrow (alas).  We had our full walk this morning, and I’ll do my swim.  And then I want to scan some more pictures.  I hope the energy continues.  Two days of sluggishness were a bit worrying.

Happy Thanksgiving!

I played vegetable yesterday.  Or maybe slug.  After my swim I did almost nothing all day except read and sleep and a couple of crossword puzzles.

At dinner last night we discussed things like what to do with what’s left of me when I’m not using it any more.  I figure that, at that point, I won’t care.  If I have anything suitable for recycling or study, it’s okay with me if it gets put to use.  I know that I don’t want an elaborate funeral, burial, etc.  I’d like to think there would be some kind of memorial service, but I won’t be around to help plan it.  (I guess it doesn’t sound like very cheerful table talk, but I know my sweetie wanted to see how family members felt about things, so it was worth it.  And, you know, it didn’t make me feel sad to discuss it.)

I feel a bit more energetic today.

Happy Thanksgiving.