Wonderful Weekend in a Wonderful Town

Sometimes things just work out perfectly. Max and Anya, as part of their birthday present to me, invited me for a weekend in NYC -- and special thanks to Denise, Anya's stepmother, for letting us stay in her apartment in Manhattan.
What can I say? The weather was perfect, the food delicious, the company -- of course -- the best. We even walked out of the apartment building and found a taxi right there at the corner, something I'd thought only happened in movies.
Miles was a delight, and had two chances to play in one of the playgrounds in Central Park, plus a trip to the Central Park zoo and FAO Schwarz. One evening Max and Anya were able to go out for a drink together while Miles and I zonked, so there was something for everyone.



Sunday in the park with Max, Anya, and Miles.












The reason Jerry was happy to stay in the sticks. You might have wondered why we left him behind. As Anya and I walked through Times Square, she said, "I sort of wish we could zap Jerry right here in the middle of all these people, just to see the look on his face, and then immediately zap him back to safety."

His comment was, "I'm glad you had a good time, but I can't imagine how you could, with all those people there."





And we got to see Wicked! And, yes, it was wicked awesome.

First FOLFOX

The major problem with the plan I had for yesterday afternoon was that the first medication they gave me was an anti-nausea drug which left me so woozy that I only got a third of an inch done on the socks and barely started the novel I'd brought. However, I did beat Jerry at Scrabble, wooziness notwithstanding. (He never, ever gives me a break because of my condition; I always take advantage of the fact that he's concerned, anxious, worried about me. It's the secret of my occasional success.)

He went out for a walk in our beautiful almost-summer weather while I got pumped full of the various kinds of stuff. Then, eventually, the nurse brought over the fanny pack and pump and showed us how to use them. No-brainer, except in case of leakage. The stuff is poisonous, so most of the concern there is to make sure it doesn't get all over everything. Or cloggage, in which case you call either of the two numbers on the info sheet, though the nurse warned, "Just don't call the doctors. They don't know anything about this stuff." Or (we are, after all, in the 21st century), terrorist attack. I'm not sure why they stuck that into the packet, but it did pad it out nicely.

We got home and I immediately started in on more anti-nausea meds. The basic rule is to take the meds just before you need them, not after.

The only problems came after we went to bed. I put the pack, nicknamed La Bomba, on the headboard and thanks to my practice over the past few nights managed not to get tangled in the 45" of tubing. But I felt a lot of nausea, pain from my rotator cuffs, and to top it off, a bad case of the Periodic Limb Movement/Restless Legs Syndrome I've had a lot lately. So there I was, twitching, sore, and holding the Stoneyfield yogurt container lovingly to my breast, just in case. I felt rather as though I were inhabited by a thunderstorm. Jerry, of course, was awake and sympathetic for the whole thing, and as usual felt helpless, which upsets him even more.

I finally got up and took a whole bunch of pills, hoping that they wouldn't work against each other. Go figure -- I slept better than I have for weeks.

Slight digression into knitting (and about time, too)

It isn't really a digression, though, because as soon as I found out that I was going to be spending about four hours every other week in the infusion room my first thought was, "Now maybe I'll finish the damned socks."

I love making socks -- until I get to the cuffs, at which point I get either frustrated because the counts won't come out right for a pattern, or bored because I gave up on the pattern and I'm doing endless rounds of ribbing. I always do toe-up socks because I can't stand the idea of having to get through the cuffs before I can do the fun part. (My grandma always ate everything on her plate before she'd allow herself the fun of eating dessert. I do not take after her.) But with that much time hooked up to the IV stand I can bite the bullet, haul myself up by my bootstraps, put my shoulder to the wheel, and finish the damned socks.

The shawl is another matter. It's from gorgeous hand-dyed boucle, and it's wonderfully soft and easy to work with. The only problem with it is that I'm going point up, so each row is longer than the one before. On the other hand, I'm doing it completely in garter stitch so as not to get in the way of the subtleties of the colors, so I just chug along on it mindlessly.

What next? It will partly depend on the side effects of the new chemo (chemo brain leads to some interesting pattern variations). But the possibilities are endless. For the next two days, while I wear the portable pump and delivery system I gather I'm likely to spend most of my time asleep. Then I'll feel better and, hopefully, more energetic.

For those of you who remember the pop music of the 40's (is anyone left who does?) I woke up this morning singing "So you put the fanny pack here, and the chemo goes round and round, round and round, oh-ho-oh, and it comes out here."

I made it!

Sixty-seven years old today, and so glad.

My Top of the Hill Friends gave me a party, as you can see, Hawaiian-themed. I wish I had a picture of the cake, with palm trees, blue waves, and a surfer, but there's none left. Today includes a massage and dinner at Nicola's, a good restaurant with incredible moules. And Sunday a weekend get-together with most of the family (we miss you, Cinda and Rob).

One of the things I do is think: if I didn't have cancer, what would I want to be doing now?

Just this.

Moderate encouragement

First of all, don't ever get in a car with Jerry and a GPS system. He takes every contradiction to the directions he had in mind as a personal affront and ends up swearing at the nice lady in the machine who clearly was taking his comments personally herself and said "Recalibrating" increasingly gruffly as we drove around and around Boston. But we got to Dana Farber, and finding it was really the most traumatic part of the day.

Here is what Drs. Hata and Wolpin basically said:

• It is extremely unusual for someone to do so well so long on just Gemcitabine. Eventually the cancer gets used to the Gemcitabine and it no longer works; this is what has happened to me. So then it's time to move on.
• Dr. Nickerson had recommended a form of chemotherapy called 5-FU. Dr. Wolpin strongly suggests a chemo cocktail of 5-FU, leucovorin and oxaliplatin, called FOLFOX. We'll explore these two options further with Dr. Nickerson day after tomorrow. There are side effects, and at least FOLFOX involves a 48-hour continuous delivery system, which means I'd wear a fanny pack containing the drugs and a pump. A tube would take the chemo up through my port. My first question, of course, was whether I could play trombone while wearing the equipment. I don't think anyone had ever asked them that before, because the answer came down to "do whatever you can, but don't do anything that involves repetitious motions while you're wearing it." I'm not thrilled at the thought of trying to carry on daily activities hooked up to the system, not just trying to play trombone, but also what about yoga? What about sleeping? I'm still trying to get used to new sleeping patterns to help the rotator cuff tendonitis. But obviously I'll do what I need to do.
• Dr. Wolpin said that he had a few patients who do this well on Gemcitabine, and when it's necessary to change the medication, these are the patients who also seem to do better than usual with the new ones, which is another hopeful sign for my ability to tolerate and last longer with the 5-FU or FOLFOX (which Jerry keeps misunderstanding as "firefox", "foxwood", or "firewood"--don't even ask what 5FU brings to mind).
  
• We asked about some of the other options, and the general impression that I got was that they're still being tested and might be a third option for later on, when either the new chemo stops working or the side effects get too bad.
• He was polite about curcumin but snickered at the thought of celery juice (not that I'd try it after my cabbage juice experiment). He said to try whatever makes me feel better, which is what I've been doing anyhow.
  
• Unfortunately, no one in the examining room seemed ready to wave a magic wand and make the whole situation go away.
  

We left with less dread than we had come in with. The bottom line is that we should savor each day and continue to live as healthy and happy a life as we can, no matter what gets thrown at us.

Random things I love these days

Mothers' Day flowers from Cinda.













It's the beerbutt chicken season again.






Grandma and Miles make rosemary jelly together.









A new knitting project.






Goslings on our pond, guarded by their parents.



Life is good. (Except that I can't seem to get the captions next to the pictures.)

The good thing about electronics is that we won't waste so much paper

That's three inches of paperwork, plus the disk that has my latest CAT scan on it. Dartmouth-Hitchcock has (presumably) sent all of this on to Dana Farber, but they suggested that I take copies along. I hope that the doctor there gets them and has a chance to read them before we arrive, because it's taken me an hour and I'm only about half way through.

Reading my own medical records is the kind of fascinating/boring experience I haven't had since grad school, when I went through obscure articles in learned journals hoping to find that one bit of esoterica which would make my paper look meaningful.

I find that I am a pleasant 65- or 66-year-old female, alert and cooperative, apparently capable of understanding what the doctors say ("pt was advised of and understood risks of the procedure"). Everything is tracked and recorded: my blood pressure, blood counts, subjective pain, weight (ha! I caught them. One week it was suddenly 148), and of course, the frequency, doses, and reactions to the chemo. I am impressed. Dartmouth-Hitchcock does not lose track.

D-H also uses electronic record-keeping, so they made two copies of the whole thing on paper to get to Dana Farber. Plus of course the disk. I wonder, do I play that on the computer or the DVD player? I'd hate to use the wrong one and maybe erase the whole thing, but I would like to show off to Jerry what my insides really look like. I peeked during the CAT scan, so I can at least find the spine and the lump. That one's easy, because it has the needle sticking out of it.

I read on the pancreatic cancer forums about others dealing with this who also deal with incompetent, rude, and lazy hospitals and staff. I am thankful for the wonderful people at D-H, large amounts of paper and all.

Next steps

Thanks to the help of Mean Mama, who was able to help expedite matters, I have an appointment on May 17th at Dana Farber with one of their best oncologists (and that means very, very good). The week will give my body time to flush the Gemcitabine out of my system and build up all my blood counts, not to mention finishing the healing of the rotator cuffs. (They're doing much better, by the way. I've been diligent or maybe even obsessive about doing the exercises and balancing bags of frozen peas on my shoulders as needed, and they feel so good that it's one less thing to worry about.)

And thanks to Arctic Mermaid's generosity in sharing some of her yarn stash, I have projects galore to keep me busy while I wait.

And thanks to all of you who've sent calls and messages of support. I can't imagine what it would be like to go through all this without you.

Things don't always work out the way you want them to.

We met with the oncologist this morning. The lump in the abdomen is definitely malignant, and it's pancreatic cancer. (There was some question about this, since it might actually have been possible for 11-year-old breast cancer cells to show up again, or it could have been something else entirely. A doctor friend told me about a patient of his who had three different kinds of cancer at once. And I think I have problems.) In any case, the good news is that the lungs and liver are clear and the pancreas itself doesn't seem to have changed much in the two years since the surgery.

However, the new tumor means that the Gemcitabine has stopped working, which it always eventually does, and the question becomes what do we do next? Dr. Nickerson suggests one of the standard forms of chemo, and while I'm not against them, I am interested in some of the newer combinations that have come out in the past few years. Most of them are added to Gemcitabine; Dr. Nickerson's feeling is that if the Gemcitabine has stopped working, why add it to something else? A good question.

We went in with seven pages, single-spaced, of information (I always do my homework), which either impressed or overwhelmed him. I got most of it from PanCan, the Pancreatic Action Network, whose volunteer was extremely competent and helpful.

At this point it becomes a balancing act of quality and quantity of life, something I am simply not ready to deal with right now, mostly because I still feel generally good. So, what will keep me in this state as long as possible?

What we decided to do was to go for a second opinion, not because we don't trust the doctor but simply to get as much information as we can get. Next step: the trek to Dana-Farber Cancer Institute in Boston, after which we'll have, if not The Answer, at least some answers, or possibly a whole new bunch of questions.

Last evening, when a friend asked how I was doing, I said, "I got some bad news," and he shook his head and said, "No. We all got some bad news." His -- and your -- support means more to me than I can say.