July 21 -- After Leslie activated the "network" yesterday to send birthday messages my way, she still had one surprise up her sleeve. When I arrived home at about 6:30 - bearing the spectacular birthday feast our friend Lindsey had prepared for us - Leslie was looking weak and short of breath. Even before I put down the food, I'd asked if she was OK.


It turned out she'd already put in a call to her doctor to report being short of breath. Amazingly, her trusted surgeon and wonderful PA were still in the office and diverted us from a an ER trip, bringing us into the empty clinic.

Leslie's lungs sounded good, but they wanted to get a new CT scan to rule out new embolisms (hard to imagine on her mega-dose of blood thinners). Dr. Yamada demonstrated her clout by getting Leslie into a private room instantly, and we wheeled across from clinic to hospital.

Emily wonderfully packed up my birthday dinner and brought it to us...arriving just in time for them to tell Leslie she wasn't allowed any food. Thankfully, Leslie didn't mind if I ate, so I enjoyed Lindsey's perfectly cooked pork tenderloin and sides, and Emily's carrot cake.


They picked up Leslie for the CT scan around 11:15 and we were back in the room by midnight (bonus: the icy CT labs have heated blankets). Due to a hospital-wide shortage of cots, I slept on the floor until 3 am, when they turned up a cot (not sure I want to know what causes a cot to become available at that hour). Leslie didn't sleep well, and the first round of med students arrived for rounds at 6:30, so we will both doze today, I expect.


The CT scan looks fine, so the good news is no emboli. Of course, that makes Leslie just what my brother-in-law Joe says you don't want to be, when it comes to doctors - interesting. The first doctor to visit said they want to keep Leslie overnight once more for precaution (releasing her tomorrow straight to chemo, we imagine), but it's not official until we hear from Dr. Yamada.


Locals, check in with me as the day progresses. If we do have to stay, visits might be welcome!


On the other hand, given the 100 degree heat and our underpowered home window AC units, staying here does seem like an extreme but effective way of keeping cool!

Update!

Home again! They didn't find any reason for the shortness of breath,  > but ruled out all the nasty possibilities, and addressed a shortage of  > electrolytes they discovered along the way. My breathing has eased  > up, and both David and I are looking forward to a good night's sleep  > before tomorrow's chemo.

July 17 -- When we last left our intrepid traveler, she was chipper and active in the wake of her first chemo treatment. She'd battled off the first hints of nausea with tea and big vocabulary words, and was enjoying a cool summer evening on the back porch, tallying up the score at Leslie 1, Chemo 0.

By Saturday morning, the chemical cocktail sloshing about inside her had made like the Japanese women's soccer team, and snuck in a score of its own. Leslie woke up feeling queasy and worn down, and spent much of the morning drifting in and out of sleep. The heavier anti-nausea meds were keeping everything in, but she'd lost all energy. We passed a very quiet day, expending the most energy on ensuring that Leslie stayed hydrated on Gatorade in flavors and colors not found in nature.

(There's method to the Gatorade madness. A friend suggested not drinking things you generally enjoy when you are feeling nauseated; that way, you don't risk developing an aversive reaction to something you like...this friend had become repulsed by water, not a good thing in the long run. As the resident runner, I am also the Gatorade sommelier.)

Today, Leslie has rebounded well. Though she has little get up and go, there's really nowhere to...get up and go, what with the 90 degree temperature and matching humidity. Instead, we've stayed in our air conditioned room, watching Le Tour and the Women's World Cup final. Feeling like eating is still a challenge, but Leslie has found a few sustaining foods she can take in - lots of blueberries on cereal and in a smoothie, and homemade chicken soup for dinner.

Ennui is taking the place of enervation and, as I type, Leslie is doing pliés at the end-of-the-bed-barre and practicing agility, strength and balance exercises given to her by her trainer. I'd say we've weathered the first weekend well.

Sustained focus and conversation are still draining, so please excuse Leslie if she doesn't come to the phone or answer e-mails immediately. Know that she is enjoying every response to these messages!

July 15 -- It's been a while since David or I wrote, because nothing much has been happening. I've been healing. Lying around reading when that was the right thing to do, going on daily walks, visiting with a wonderful variety of friends, and even having the occasional workout session with my terrific personal trainer, Jessica. Gradually, I've been "coming back on line" -- doing easy chores like loading and unloading the dishwasher, washing some light loads of laundry, cooking parts of meals (or at least, masterminding the menu). I had a great, revitalizing trip to Rhode Island.

In the last two days, it feels as though I've reached a new, stronger plateau (or meadow -- choose your own metaphor). The big thing is that I'm in less pain. Until now, I either had to juggle my various pain meds to make sure I was always covered, or endure some painful half-hours while I counted down the minutes until I could have my next dose. In the last two days, I've gone the full four hours with relatively little discomfort or distress. In fact, I've gone half an hour longer! This feels very encouraging to me. The other thing I noticed is that after a very full day yesterday -- workout in the morning, wig shopping in the afternoon, with a reasonably lengthy drive out to the suburbs -- I did NOT crash when I got home. And finally, I noticed today that the scar on my skin doesn't pull at all or growl at me when it gets stretched. It just feels like ... my stomach. All of this is great.

Which is good, because this morning I started the first of six cycles of chemotherapy. Some of you have asked what it would be like, so I thought I'd take you along with me on today's part of the journey. If you aren't interested, I won't mind if you stop reading here. The details aren't at all gory, though, if that worries you.

David and I arrived at the infusion center at 7:45 am. First order of business was to take vital signs and set up access into my indwelling IV port (a plastic piece with a rubber septum that sits under the skin of my chest and has a catheter that runs under the skin up to the jugular vein in my neck, whence it inserts and snakes down toward the heart). This is accomplished by freezing the skin with a spray and sticking in a special needle assembly. It feels just like getting a shot without any medicine. Then back to the waiting room.

Shortly, I was called for my treatment. First of all, can I say how nice and helpful everyone was? Knowing it was my first visit, everyone took the time to acquaint me with procedures and say things like, "Each time you come you'll do such and such." The physical layout resembles a pre-op or procedural prep area: one large room (okay, two) with a central nursing station and treatment areas ringing the periphery. Some of those are just comfy armchairs separated by curtains from each other. I scored one of the small rooms with a glass sliding door and a gurney because of the type of chemo I get. All areas have side chairs for up to two visitors, and David stayed with me throughout the day.

First I got a whole array of pills to take: three different medications to fight nausea and vomiting. Then I got two different antihistamines injected into my port. The first drug I receive, Taxol, can cause allergic reactions so they give the antihistamines prophylactically (saving bigger guns for demonstrated reactions). Somewhere in there my nurse hooked up the Taxol to my port, connected via a pump that was set to deliver it very slowly for the first 15 minutes -- to check for a reaction -- and then somewhat faster over the next three hours. They are VERY careful to make sure the right medicine goes to the right person. My nurse summoned another nurse to verify that the bag in her hand matched the order on the chart, speaking the vital information aloud, and then she doublechecked the bag against my wristband. She also hooked up a liter of saline to the line because the second drug I receive is hard on the kidneys and hydration is essential. (This is also why they monitored my output; all day I had to pee in a plastic container, called a "hat", that is set into the toilet. The nurses cheered when I filled it to overflowing -- 1000 ml -- after my second visit. They really like it when the kidneys function well.)

After that, things are a bit of a blur. The antihistamines made me sleepy and loopy. One thing I know is that we had a great visit with my chemo nurse, Connie, who coordinates all my visits and labs and other tests. She spent about 40 minutes going over the schedule for the next 2.5 months, and making sure I understood what medications were mandatory and the schedule I should take them on, and which were optional and the situations in which I should turn to them. She also explained what to expect in the way of side effects, and what signs to look for that could signal a problem, and what to do if that happens. This was great. There's nothing that makes me more anxious than an information vacuum, and by the time Connie left every nook and cranny was filled. She also is able to impart that invaluable, "I'm going to help you get through this; you can do it; you'll be fine" air.

The taxol finished about noon. We celebrated with lunch, which you have to provide on your own (although there is a kitchen with coffee, tea, and hot chocolate, a refrigerator, and a microwave). Being locals, we know the best eating establishments on campus and David brought back Penang curry with tofu for him, and a chicken shawerma sandwich for me. Yum.

The second medication, Cisplatin, gets delivered directly to my belly through a tube (a Hickman line) that was sutured in place during my surgery. But first -- or maybe concurrently, I'm not sure -- the nurse hooked up a second liter of saline to that same intraperitoneal line. She warmed it first, so as not to cause cramps. Unlike the Taxol, which gets pumped in at a predetermined rate, the rate of flow for the saline and Cisplatin is determined by gravity. The ideal is to have it flow as quickly as possible without causing cramping. I had no trouble with the maximum flow rate, which was a lucky stroke. That took about three hours too. After that, the nurse gave me a third liter of saline via the IV port. Over the ensuing hour, I had to change my position every 15 minutes: one side, other side, belly (Yay! I can do that now!) and back. This is to move the chemicals around the cavity and reach every surface.

At 4:25, almost exactly eight hours after I started, I walked out the door, collected my prescriptions for anti-nausea drugs, and went home.

Can I just say that I love my port? After my hospital stay -- and its six or seven different attempts to establish an IV line and keep it open -- I am a big fan of anything that leaves the arms and hands free, and minimizes discomfort. I couldn't feel this at all.

Throughout the day I felt pretty good. Excited, even, with that adventurous, swaggering sense that accompanies the start of many difficult endeavors when one doesn't quite know what lies ahead. By evening, the glow was off the rose -- though, not badly, and with one of those silver linings that seem to permeate this whole experience. I started feeling shaky, a little dizzy, and, yes, sick. I elected to take the least powerful anti-nausea drug in my armamentarium, along with a cup of tea we brought back from Ecuador, that had been effective for altitude-induced nausea. Before too long I started feeling quite decent again, bringing the lesson that I can weather and take care of at least some of the smaller setbacks.

So that was Day 1. Barring complications, there will be five more of them. Next Friday, Day 8, is less grueling. I only get Taxol, so only will spend half a day and don't have to absorb quite so much saline (it's an easier drug for the body to clear). On Day 8 the Taxol will go into the belly. There will be five more Day 8s. The following Friday, Day 15, is a day off. No chemo at all. And there will be five more of them too! Embedded in each cycle are two days when I have to get blood tests to check how well I'm tolerating the treatment. They determine whether we can proceed as scheduled or modify somehow.

If you're still with me at this point, thanks for reading about my day.

June 4 -- Even Goldilocks only had to sleep in three beds. When I go in tomorrow morning, we'll see whether I find Leslie in the room where I left her tonight, or in another, one corridor over. Somewhere around midday today, Leslie started feeling that her heart was pounding, and in looking into this the doctors heard Leslie's long-standing PVC (premature ventricular contraction). It's been well explored and no one seems especially worried about it, but given everything else, the doctors wanted to keep an eye on it -- by transferring Leslie to a bed in the cardiac unit where they can do overnight cardiac monitoring.

This would be Leslie's fourth bed -- the first was tooooo hard. No, wait a minute. The first was a single room equipped for radiation therapy, and was needed for that purpose. The second was a double room that they'd promised would be blocked as a single for Leslie, but they needed the extra bed. The third has been perfect, and she likely would have been released from there had they not wanted to watch her pulse...and she may still be. When I left at 9:30 tonight, they had yet to find a cardiac bed for her. Chances are good that, in true hospital fashion, they'll wake Leslie in the middle of the night to move her.

In any case, Leslie is likely to be released tomorrow sometime. She has accomplished the key task required for release...and this is where fourth graders come in. To get out of the hospital, you must...fart. Do not pass gas, do not collect $200. To put this in terms Leslie would appreciate, she was until this afternoon like Sarah Palin -- she talked a good game about boosting domestic gas production, she just didn't actually accomplish the task. No longer, though.

Not much new today, otherwise. They are still tweaking Leslie's pain meds, but mostly she's comfortable except in two situations -- when she burps (fourth graders ride again!) and when I make her laugh. These both cause painful spasms. One of these stimuli can be easily controlled; now, if only there was a blocker for humor.

More wonderful visits today; much appreciated and will be even more important in the days to come cooped up at home. Leslie still tires easily, but she's good about saying when she's worn out.

More soon! Thanks for all the "karma rockets" headed our way.

June 3 -- Today was a combination of not much happening and lots happening. At the start of the day, Leslie was connected to an IV line, catheter and an epidural painkiller line. This afternoon, she is tube free...unconnected. This morning, Leslie was on clear liquids, now she no diet restrictions (though not a huge appetite). She's been for two good, long walks, the first with a nurse and the second just with Emily and me and a friend.

The switch to oral pain meds has her a little sleepy, but when she's up she's quite alert and upbeat. She's had really nice visits today, friends and colleagues, including one who brought a very thoughtful selection of science and gardening magazines.

The best odds are on going home Sunday. Tomorrow is an outside possibility, though only if Leslie is eager to go home, which she isn't. Monday is possible if recovery slows at all.

Four people today have said how great Leslie looks -- two doctors and two laypeople. I tend to agree, but I think I'm a non-objective observer. It's good to hear from others.

That's the news from Camp Leslie, where all the women are strong, good looking and above average.