Chemo: Cycle 2, Day 1

I goofed last time I described the Day 1 chemo (aka “Big Bad Chemo Day” according to friend, current houseguest and all-around wonderful person Katie). I don’t get three liters of liquid poured into my body during the day. It’s 4.5 liters, split about evenly between the veins and the belly. The way it breaks down is (in order): one liter saline via IV plus Taxol in 250 ml saline, half a liter of saline IP (intraperitoneally), Cisplatin in one liter of saline IP, the rest of the liter of IP saline, and finally one more liter of saline IV. The extra 250 ml saline comes from flushing the Taxol and Cisplatin lines, because really, it would be a shame to waste all that good stuff. Or something.

In case you are having trouble imagining what these volumes look like, here’s a view of the pole holding some of the bags. The Cisplatin is light-sensitive, so it is covered by the brown bag. (This also means that I become light-sensitive when it is in me, and I need to be vigilant about wearing sunscreen.)

Yes, the 2.25 liters of fluid in the belly feels uncomfortable. And also leaves me looking more pregnant than Sarah Palin did three weeks before she claims to have delivered baby Trig.

Since I’ve demonstrated no allergies to Taxol, the nurse who administers my chemo (Marissa) has been able to streamline and telescope the process. We knocked 35 minutes off of Cycle 1’s time! In at 7:45, chemo started about 8:30, and out the door at 3:45.

At the end of the day, I totaled up all the drugs that have entered my body today. Here’s the rundown:

At home (includes prescription and OTC drugs, including Tylenol and multivitamin): one injectable, one inhalant, and seven oral (Total: 9)

Before chemo: three oral anti-nausea drugs and two IV injections (prophylactic Benadryl and Pepcid) (Total: 5)

During chemo: Taxol and Cisplatin (Total: 2)

After chemo: heparin to flush the IV port and IP tube (Total: 1)

Yes, friends, that is a grand total of 17 drugs that have entered my body today. If I can’t get to sleep – and as tired as I am, some of these drugs make me feel pretty wired, so it’s a real possibility – I will take a sleeping pill and up that to 18. Properly, I should count my prescription eye drops too; that makes 19. Surely I can find one more drug to make it a nice round number…

Briefly: hair loss is slowing down, leaving me for now with a thin but nice-looking head of hair. Chemo nurse Connie says it will speed up again, and that it will start falling out in clumps. She wasn't able to predict when. And based on my experience from Cycle 1, I expect to feel pretty cruddy over the next few days, but basically getting better each day. Right now, I feel surprisingly good, aside from the belly discomfort.

UPDATE: I did take the sleeping pill and by 5:30 am I was developing a migraine. So the migraine medication took me to 20 different drugs in a 24-hour period. That's disturbing ....

Me vs. Cat (ctd)

I've pulled into the lead. Nora is enjoying this process more than I am.

Less Fluffy, but Cleaner

Hair loss is accelerating. Today I pulled two large hairballs out of the shower drain. And yet … if you hadn’t seen me in a while you might not notice much difference. I can tell that it’s thinner and shorter, but the casual observer certainly wouldn’t peg me for a chemo patient. Yet. I keep wondering which day it will be. Tomorrow? Next cycle? Time will tell.

One silver lining to the hair loss: I am cleaner than I have been at any time in the last two months, i.e. since my surgery. The easiest way to get rid of the loosening hairs is to shower, so I have had a record three days in a row of showers.

“Eeewww,” I hear you say. “Don’t you usually shower each day?” Well, yes, I used to. Like many things in my life, taking a shower is harder than it used to be. It requires waterproofing the Hickman line through which I receive my intraperitoneal chemo. This is a tube, about the diameter of IV tubing, that runs into my belly and is sutured to my skin, and then covered by a dressing. Waterproofing it can be accomplished one of two ways: with a patch of adhesive film called Tegaderm (if you’ve had an IV lately, this is the stuff that secured it in place), or by taping plastic wrap securely on all four sides. It’s tricky to position the Tegaderm, which is just slightly larger than the dressing, and the taped plastic almost always leaks. One way or another the dressing needs to be changed afterwards. So, it’s not as easy as just jumping into the shower whenever I feel like it.

Hair loss: Me vs Cat

Nora-the-cat and I had a hair-brushing party on the back porch today. So far, she's winning. I think.

Hair Today, Gone Tomorrow

Probably the most recognizable side effect of chemotherapy Is hair loss. The reason this happens is that, like the cells in the gut, hair follicles are among the few cells in the body that naturally divide rapidly. The chemo drugs work their magic on them as well as the cancer cells.

I’m told that I can reliably expect my head to start tingling in the next day or two –to feel as though the hair is in a ponytail and being pulled too tight. (Secretly, I think this must be cosmic retribution for all the times my young dancers screamed that I was pulling too much in trying to give them the perfect performance bun.) By Friday, I will probably wake up to find hair on my pillow. When I wash or brush my hair, more will come out – not occasional strands, but in clumps.

I am also told that no matter how prepared you think you are, it will come as a huge and upsetting shock. This I believe.

Some women shave at the first signs; others enjoy their natural hair as long as possible. I’m putting off the decision. Chemo nurse Connie says that most likely I won’t lose all my hair after this first cycle, just some of it. So I think I will wait and see what I look like before deciding what to do.

On the practical side, I’m armed with an initial supply of hats, caps, and scarves. Several weeks ago, cousin Sandy took the initiative to whip up a few caps on spec, somehow finding styles and colors that suit me beautifully even though we don’t see each other often. Sister Ellen located an online purveyor, whose extensive collection my mom, Caroline, and I surveyed and from which we selected several nice patterned scarves and more prosaic and practical cotton-jersey doo-rags. Caroline bought me a boldly patterned sun hat. And today, friend Jane and I are picking out fabrics from which she will whip up yet more caps.

I don’t figure I’m a wig kind of gal. At the moment, that feels like hiding to me, and I kind of want people to know my situation. Knowing that my feelings could change – or that a special occasion could call for one – I took the precaution of visiting the wig store while I still have my own hair, so the stylist could match the style and color. (So sorry to those of you hoping I would recast my identity and go blond or punk!) This information stays on file at the store should the need arise.

July 24 -- Last Friday was Chemo Cycle One, Day 8. I only got one drug, Taxol, so it was a much shorter day and we were home by noon. Having taken in all the new procedures and details last week, this week I elected to put on headphones, lie under a pile of blankets, and escape into my Pandora folk station. Remember how last week I described my response as being a little "adventurous and swaggering"? Yeah, not so much now. Over the week I developed a really visceral terror of even approaching the Infusion Center. Part of this is classical conditioning -- avoid that which make you sick -- and part is that it forces me to confront the seriousness of my illness. Many of you have commented on how "brave" and forthright I seem. The reason I can do that is that I keep my bigger fears securely stashed most of the time, where they cannot easily slip out and bother me. Not so easy to do when someone is about to pump toxic chemicals into you because that's what it takes to fight this.

So far, I've had a much better response this week than last. I've felt reasonably normal, have been eating decently well, and just feel a little achy and tired (when I'm not feeling jittery and wired from the anti-nausea meds, which work by blocking neurotransmitter receptors). The meds are doing their job. David and I are even contemplating beating the heat by going to the Harry Potter movie later today! It's possible that my body just isn't shocked this week the way it was last, but I suspect it's mostly that I didn't get Cisplatin this week. I guess I'll find out in two weeks, when it's Round Two, Day One.

The new thing this week is an injection of Neulasta, which stimulates the production of neutrophils in order to boost the immune system. I'm told I can anticipate aches in the marrow-producing regions like the hips, long bones, and sternum.

I'm developing a whole new relationship with food. At the beginning of last week, just chewing and swallowing was a challenge, and I turned to canned nutrition supplements to make sure I was getting reasonably adequate calories and nutrients. (I've lost almost 20 pounds from my pre-surgery weight; the best that can be said about this is that, based on my current BMI, I no longer contribute to the nation's obesity epidemic.) Chemo works by interrupting cell division in rapidly-dividing cells. In the body, this includes the cells lining the alimentary canal from mouth to ... the other end. One of the consequences is alterations in the sense of taste. So, even though my appetite is quite good (at this moment, anyway), eating is not the pleasure it used to be. Flavor profiles are very flat, and I can taste some things and not others. (Hummous, for example, read as "garlic" and "chickpea", with no hint of sesame or lemon and certainly not as an interesting melange -- not worth eating -- and gummi bears have no taste whatsoever.) Very assertive flavors work best, such as a tomato-based lentil soup I had recently. But to some extent, eating is now an exercise in satisfying hunger in whatever way is not actively offensive. (Note to Alex: no need to send more M&Ms, though I surely appreciated the first batch.)

The more astute among you are saying, "Wait! if chemo affects cells in the alimentary canal from end to end, aren't there effects at the other end too?" Short answer: yes.

Luckily, I'm told side effects like this will resolve once chemo is finished.

The last big thing I want to tell you about is that after something like seven months of taking round-the-clock, on-schedule pain relief meds, I am now back to occasional, as needed, use. This happened very suddenly, and the best I can figure is that I just decided to be done with the surgery and move on. I'm put in mind of a kid I taught a while ago who we affectionately called "The Puker". Every day, he'd come into science class and leave several times to visit the nurse, the bathroom, or, sometimes, the trash can. One day, as he stood retching over the trash can I said matter-of-factly, "It's time to be finished with that," meaning "for today". The kid never puked in class again. I think at some level I must have told myself the same thing. On a related note, the bit of incision that developed an interior, draining pocket, and that I've had to pack with gauze twice daily for the last six weeks, has finally closed. So I really do feel done with that.

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 16 -- You can't always get what you want, But if you try sometime, you get what you need. Leslie and I each have had our Rolling Stones experience in the past few days.

I was due to fly to Sao Paulo for a conference on Monday; our friend Katie (the girls' second mom) came up from Tennessee with her daughter to take over my role as caregiver, gatekeeper, bouncer and waiter. I showed up at O'Hare Airport to check in, and the gate agent leafed through my passport and said, "where is your Brazilian visa." My...what? Despite having visited Brazil about 8 years ago, I totally forgot about that (nothing else on my mind, obviously).

I set my Brazilian colleagues to calling in favors toward expediting a visa in under 24 hours (3-5 days is standard). The call that I could come in and get an immediate visa came around 1:00 on Tuesday; from there, it was a race against the clock to make the last connecting flight at 4:10. For both Leslie and me, this race exemplified the true meaning of "ambivalence" -- feeling strongly both ways. I/we wanted me to make the flight because seeing new programs and meeting new people are so central to my work; we wanted me to miss the flight because I'd then be home to accompany her to the doctor's appointment where she would get pathology and forward plans.

10 minutes. Had the consular agent taken the 15 minutes he promised instead of 40 minutes; had the traffic been a little lighter on the Kennedy; had the American Airlines ticket agent been a little more decisive, I'd be 6000 miles south today.

But, you get what you need, and I am incredibly grateful in retrospect that all those Stones lay in the road.

Having deeply buried the lead, we had our post-op session with the doctor yesterday to get the pathology and way forward.

They are confident that all the tumors were uterine cancer; there is no ovarian cancer, but the metastases are "acting" like ovarian cancer metastases would. As a result, the doctor wants to take a very aggressive approach that is perhaps more similar to what they'd do for an ovarian cancer.

Starting in mid-July, Leslie will begin six rounds of three-week cycles of chemo. On day 1, she'll spend a full day getting intravenous and intraperitoneal infusions of two different drugs. On day 8, she'll get a second round of one of the drugs, intraperitoneally. On day 9, she'll get a white blood cell booster, that she can likely administer herself at home. Week three is a rest and recovery week, and then the dance begins again.

The wonderful chemo nurse who walked us through the process said the first several rounds are pretty bad, but that people begin to rally and feel better in the later rounds. The side effects are pretty much what one always hears about -- nausea (offset by three different anti-nausea drugs), hair loss, long-bone pain, loss of interest in Sarah Palin. (Just checking that you're still reading.)

Not what we wanted, certainly, but what she needs.

In other ways, we have surely gotten what we want and what we need. We are beyond grateful for the response of our friends, family, and Leslie's Lab School family. Some of you may have read the New York Times article about what to say and what not to say to someone with a serious illness. For the most part, it is on-target; our biggest disagreement is that we have cherished every "thinking of you" just as much as the visits, meals, flowers and books. Clearly, we will continue to need your encouraging "karma rockets" from now through the fall.


Leslie is feeling better every day post-surgery, and is planning a trip to Rhode Island for just pre-chemo. She's walking daily, up to a mile at a time, and pestered her doctor to connect with her personal trainer to work out an exercise plan. Her plan is to go into chemo in as strong shape as possible -- physically and mentally. For those who say, "you're a trouper" (or trooper) Leslie responds, "it beats all the alternatives." Rest assured, though, that if down days come, I'm ready and willing to be her human "Bobo doll."