Back in the Saddle Again...

Whoa. This last treatment really threw me for a loop. For those of you who didn't know, I received a new drug cocktail this time. The first three treatments consisted of one drug (docetaxel/Taxotere), and the second set of three treatments are a combination of three (cyclophosphamide/Cytoxan, epirubicin/Ellence, and 5-fluorouracil/5-FU, otherwise known as CEF).

So, although I had adjusted (as much as one can) to the previous chemo treatments, I did not really know what to expect from this last one. It was like starting all over again, and it turned out to be much worse than I anticipated so I was wholly unprepared to cope. I'm going to relate all the nitty gritty details here so I remember for the next time and can prepare myself and others in advance. Sorry, this is gonna be looong!

With the first 3 treatments, I felt pretty much fine the first few days after the administration. Then around the fourth or fifth day after treatment, the side effects would really kick in. I was still functional but just very, very tired on the worst days. Resting and sleeping helped a lot, though. I also had an assortment of side effects (see post from August 2), but I could manage those okay with some basic prescription and over-the-counter products.

Immediately after this last treatment, I felt like someone had punched me in the stomach. It was more pain than nausea, but it was fairly strong. I was a little more tired than usual later that evening but otherwise okay. During the day on Thursday, I had a hard time sitting still and felt very tired and uncomfortable, but I still managed to get out. I also noticed that I was pretty queasy while riding the bus that day, but I was still able to eat normally.

Then, early on Friday morning, all hell broke loose. The best comparison I can make is that it was like being 40 weeks (aka 9 months) pregnant with a hideous hangover and jet lag at the same time. I honestly do not recall a time in my life when I felt so completely and utterly horrible!

After going to bed around 10:30 pm, I woke up- WIDE awake- at 2:30 am Friday morning. I had a miserable time trying to get back to sleep. I couldn't get comfortable enough in any position to relax and get my mind to realize that I needed to fall asleep again. My stomach was queasy, everything was achy, and I had to pee every 10 minutes. I'm seriously not exaggerating- EVERY 10 MINUTES! This lasted until about 4:30 am, when I decided to take a melatonin tablet to try to trick my brain into sleeping. Thankfully, I then managed to sleep from about 5 to 7 am, when the kids got up.

I was totally incapacitated throughout Friday. I couldn't eat due to my uneasy stomach, ached everywhere, was exhausted from lack of sleep and had to pee constantly. The worst part was that I was just not comfortable in any position- not laying down, not sitting, not standing- for more than 15 minutes at a time. So I really couldn't rest or sleep because I had to continuously change positions (and pee). My vision was blurry so I also couldn't read, watch tv, look at the computer or knit. I just had to sit/stand/lie there and feel awful (and pee). It was totally mentally exasperating, which didn't help me cope with the physical symptoms any better.

To make matters worse, our daycare was closed on Friday for an inservice training. So, on the day when I felt crappier than ever in my whole life, I had the kids at home with me! We had the option of putting them in a temporary daycare location for the day, but I thought that a totally foreign environment with complete strangers would be pretty stressful for them. Luckily, my friend Pam offered to come help with the kids and saved me. She took them to the park so I could have some quiet and rest, which was the only way I got through the day. I debated whether I should have put them into the temporary daycare, but I believe that they were happier being cared for in a familiar environment by a kind, loving friend whom they've at least met before. See, don't they look happy?

Another friend, Angela, came to help in the afternoon. Miraculously, both girls were asleep for much of the time she was here so she mostly just kept me company. That was a blessing, too, though, because I was then a bit distracted from thinking about how miserable I felt. One can only sit/stand/lie and stare at the walls/ceiling for so long!

Luckily, Matti came home early that day, and his mom arrived in town so they were both able to help the girls through their evening routine. I was so weak and queasy and had to keep going to lie down every 15 minutes so I wasn't able to assist much.

Throughout the day, I was only able to eat a few crackers with peanut butter, a banana, some leftover strata (a bread casserole), apple juice and water. I did try to follow the recommendation to eat very small amounts frequently, but I had a hard time even entertaining the thought of eating.

During Friday night, I woke up at almost 2:30 am on the nose again, in the same plight as the night before. Learning from that, I took a melatonin tablet. It didn't help. So I took another one. (I don't actually know if it's advisable to do that, but I was desperate!) I finally managed to sleep a bit more around 5:15, but I was still exhausted from not enough sleep. Of course, the kids were home all day again because it was Saturday...

Although I felt the tiniest bit better on Saturday compared to Friday, I was still pretty incapacitated. I wasn't able to be up and moving about for more than 15 minute periods. So I alternated between trying to help with the kids when possible (and peeing) and then lying down. I still wasn't able to sleep at all during the day. In addition to feeling physically miserable, I also felt awful that I couldn't be there for the kids. Every time I'd come into the room, one of them wanted me to play with/hold them, but after 15 minutes or so, I'd have to leave again. Leila was pretty understanding, especially given her age and temperament, but Elisa would cry as soon as I walked away. It was heart wrenching for me.

Again, Saturday night, I was wide awake (and peeing) at 2:30 am... I took two melatonin tablets nearly right away, but they did nothing this time. So at 4:45 am I took a sleeping pill and was able to sleep until almost 7:30 am on Sunday.

When I got up, I felt okay. Not good, but semi-functional. So I decided to accompany Leila to her kids' gym class so she could have some attention from me to partially make up for the previous two days of neglect. The class went really well so I was glad I went, but I was totally beat by the time we got home. I managed to nap and was then able to get through helping with the evening routine. Despite still feeling draggy, I at least managed to eat a regular dinner (finally!) and felt a bit more normal.

On Sunday night, I stayed asleep from about 11 pm until 4:30 am, when I woke up completely alert and wide awake. I moved to the couch and tried to read a bit, in hopes I'd get drowsy, but no luck. While considering whether I should take a sleeping pill, Leila woke up crying. By the time I got her back to sleep, Elisa was stirring and making noises. So I decided it was hopeless. So around 6:45 I got up and took a shower and started getting ready for the day.

Here's where the tide really started to turn- finally. Despite waking up at 4:30 am, I felt pretty mentally alert yesterday. So I went to knit at a nearby friend's house, which was just the right thing. It was low physical exertion but social and entertaining. I even managed to finish a small project I started before my cancer diagnosis! That was a great mental boost.

I had visits from two other friends in the afternoon, and that was good for my psyche as well. The social interaction definitely helps distract me from feeling blah.

I also actually felt like eating yesterday. In fact, I ate like a horse. Either I needed to make up for not eating for 3 days, or I was just so excited to be able to enjoy eating again! The only issue now is that my GI system is so confused about how it should be working, but hopefully that will resolve in a day or so.

I wasn't able to take a nap all day yesterday, but I managed to make it through the whole day until bedtime. In fact, I even had a hard time falling asleep. Maybe I was just so relieved to be feeling better that I couldn't settle down. So I moved myself to the couch again so I wouldn't keep Matti up. I finally slept from about 11:30 to 6:30, which is the longest I've slept in 4 days. I've got high hopes that tonight I might get a real night's sleep...

So today I'm just trying to catch up on everything I've ignored for days. According to my chemo veteran friends, once you start to feel better after these CEF treatments, you feel pretty good until the next one. I'm trying to capitalize on that and hope to enjoy the next two weeks as much as I can. So now I'm heading out to enjoy some (rare) sunlight and have coffee with a friend. If you don't see another post from me again soon, it's probably a positive sign! :)

In Honor of September 11... a Guest Post!

Unless you've been in solitary confinement for the last three months, you're well aware that today marks the 10th anniversary of the 9/11 attack on the World Trade Center. In honor of remembrance of that day, I'm turning over this forum to my husband, Matti (or Matt, as those of you in the US know him), who was actually in Manhattan on that fateful day.

Although there are so many devastating memories of that day, there are probably equally many or more stories of survival and hope. As these two words have been key in my life over the last few months, I'm trying to focus on those when recalling that day. So today I'm sharing Matt(i)'s account of 9/11 and being thankful that he was far enough uptown to be out of harm's way, or we might never have met!

From Matti:

"It has been ten years since 9/11. By chance, I was on Manhattan on that day. Much has happened in my life since. But clearly the consequences of those attacks are still everywhere to be seen, and I often think back to that day -- even more so near the anniversary. I wanted to write down the following mostly for myself, having noticed I was starting to forget some details.

In 2001, I was a doctoral candidate at Harvard Business School (HBS). On the morning of September 11, I had a meeting with Noel Capon at Columbia University in New York to discuss my dissertation research on global account management.

I flew in from Boston the previous day and spent the night at the Yale Club, next to Grand Central Station. After breakfast on the 11th, I headed west towards Madison Avenue to catch a cab. I remember being annoyed at having to walk around a group of people blocking the sidewalk. They were watching a TV in a store window. For some reason I thought they were watching a tennis game. Perhaps it was a sports store, or maybe it was because the U.S. Open had just been held.

Getting to Madison Ave, I realized people were looking to the south and saw the plume of smoke rising in the air from lower Manhattan. Light brown in color, it did not look at all ominous to me. I figured it was a fire of some kind and hailed a cab to head towards Columbia University.

The cab driver immediately filled me in that the WTC twin towers had been hit by airplanes. That was big news. I think I may have asked whether it might be “just” an accident. The drive north was slow -- almost everyone seemed headed the same way. We had the radio on, and, during the drive, heard that the first tower collapsed. The news became even bigger.

Once I got to Columbia Business School, it turned out that Noel was not going to be coming in. The bridges into Manhattan had been closed before he got on the island. Luckily, I happened to bump into Sid Balachandran, an old friend from HBS (we used to close down doctoral parties together). He kindly let me take refuge in his office, and we tried to figure out what this all meant. It was hard to understand the magnitude of the events happening nearby.

Calls started coming in to Sid from relatives, making sure he was OK. Sid calmed each caller down by telling them he was miles away from the World Trade Center and that there was no worry at all. Although I had let people at Harvard know that I was ok, I didn't think it was necessary to bother my parents or other relatives to let them know my whereabouts, as they did not even know I was in NYC. Surely they would not worry, thinking that I was two hundred miles away in Boston. This was a mistake, as it turned out later, because an extended-family-wide search network had been set up by the time I contacted my folks a couple of days later...

After a while, I got restless and wandered around the business school a bit. TVs were on everywhere, with everyone following the news. When I was in the main lobby, suddenly there was the sound of jet engines in the sky. Everyone stopped what they were doing and looked at the ceiling or out of windows somewhat fearfully. It turned out that it was a fighter jet, coming to secure the airspace, flying low. Eventually, I left the building (Uris Hall) but then realized I could not get back in anymore. By this point, school IDs were being checked at all doors. They were being checked on the gates to the university campus as well, but I had no other business there anyhow so I left the campus.

I made a couple of attempts to call a friend with whom I had had drinks the night before. She worked for Goldman Sachs and did not pick up. I was worried, but I later learned that they were OK. They had all been evacuated and were still in a basement somewhere when I called. The cell phone network was also overloaded so most of my calls probably never went through in the first place.

My scheduled flight later that day was, of course, grounded. At this point, there was no traffic in or out of Manhattan. I needed to find a place to sleep for the following night. Unfortunately, like me, a lot of people were stuck on Manhattan so I could not find anything at a hotel. The Yale Club and Harvard Club were fully booked, too.

Eventually, I got the Harvard travel agency to look for something, and they found me a spot. This must have been positively the last bed left on Manhattan. It was in a run-down building on the Upper West Side, near Columbia University in fact. The reception booth (not desk) had signs demanding payment in full in advance. Luckily, the call from the travel agency had been sufficiently out of the ordinary for them that they merely demanded to get a credit card imprint from me when I came by to secure the room in the early afternoon. The room had a bed with no sheet and a window open to an alleyway. Pigeons from the alleyway had clearly visited the room before I got there. Surprisingly, though, the shared bathroom in the hallway was modern and absolutely spotless!

Later on that day, bridges were reopened, so there would have been many other hotels available. What ended up in zero supply at that point were rental cars. All of those were snapped up.

I walked south all the way to where lower Manhattan was cordoned off with sawhorses. There was some dust, and, of course, police and emergency vehicles, but I do not remember seeing much else out of the ordinary. For example, I never saw any injured people, people covered in dust, or anything like that. The horrible, massive things happening at the WTC site were contained there. What was obvious was Manhattan becoming a ghost town. All stores were closed, including fast food joints. Perhaps the weirdest sight and experience was Broadway, which had so few cars that one could cross the street without even looking.

Regular restaurants were closed as well, but a fair number of bars were open in the afternoon and evening. In fact, they were PACKED. No one wanted to be alone. Every place had a TV on, and the volume was turned to full whenever there was something new being announced. I was lucky enough to find a bar that served food. When I came back to the hotel in the evening, there were various characters lounging on the steps to the building.

On the 12th, I booked a spot on an Amtrak train to take me back to Boston. The first few trains were full so I needed to kill time for most of the day. I walked around New York. At one point, I walked through Central Park and ended up next to 5th Ave, where Army trucks were just arriving, stopping and lining up before heading to lower Manhattan. Around here I also encountered a conman taking advantage of the attacks: a man asking me for money with the story that they had been at the WTC the day before and escaped but left all their belongings in the building.

As I finally got on the train, who else was in the car but Jerry Zaltman, my dissertation advisor! He was on his way back to Boston from somewhere further south- Annapolis, I think. We managed to talk shop a little bit, but clearly it was not at the top of our minds.

That was my experience on 9/11 as well as I can remember it. I will recount two more things that are somewhat related.

One of the companies I studied for my dissertation was an investment bank that had been located in the WTC. I visited them a few weeks later in their new location in midtown Manhattan. I was very luckily that I did not have a meeting with them on the morning of the 11th.

In the months following 9/11, I ended up flying a lot, both domestically and internationally, because I was on the academic job market and was making my fly-outs to different universities. Although security was tight, flying was easier than ever before or after -- the lines were short and the planes were empty."

Giving Myself an "A" for Effort (and Bravery)

Back in March, I was gearing up for a new exercise routine to help me take off the rest of the baby weight from my pregnancy with Elisa. I got a good deal on a 5 class exercise pass through City Deal (Groupon in the US), which I planned to use once we got back from our trip to California in April. Unfortunately, after my diagnosis in May and the subsequent surgery and chemotherapy, I didn't quite get around to taking those classes yet...

So now the pass is expiring on September 16, and I figured I'd better attempt to use it so I won't have wasted my money. On Thursday, I went to my first exercise class in months, and it was HORRENDOUS. I found myself among about 20 20-something women, all of whom were fairly petite and fit with push-up exercise tops and perfect hair and makeup. In comparison, I felt gargantuan, old, ugly and fat.

As if just looking physically out of my league wasn't bad enough, I couldn't even keep up with the class. I tried to look beyond that and give myself kudos just for showing up. (After all, I did have chemo just a week before.) However, I was totally uncoordinated and painfully aware of just how out of shape I've gotten over the last few months. The Russian ballerina instructor with the attitude of a Marine Corps drill instructor didn't help matters. I left the class thoroughly deflated and in tears.

On Friday, I decided that, if I ever want to get back in shape (and use up my pass before it expires), I'd have to give it another go. Although I didn't get any younger or more fit overnight, the second class went significantly better. For one thing, there were only 7 women this time. They were all still younger and more fit, but at least a couple of them were equally uncoordinated. The instructor was also very kind and patient with everyone so I managed to keep up and actually get a good workout.

So, after all that, I figure I deserve an "A" for Effort and one for Bravery as well. Hopefully I'm now over the biggest hurdle- just getting back into the game. It's still going to be challenging both to my self-esteem and my body, but, if I can overcome cancer, surely I can conquer this!

The "benefits" of chemo

On the days when I'm feeling less than fabulous (or downright crappy), I have to remind myself why I'm doing chemotherapy. Of course, it's one of the best ways to prevent a recurrence of cancer. However, it has other benefits that you might not realize. So I thought I'd elaborate and remind myself at the same time.

1. I don't have to shave my legs or wax my eyebrows.

2. My hair dries really fast.

3. I'm saving a ton of money on shampoo, styling products, haircuts and color.

4. My nails have never looked better! Terrified of the potential side effect of losing my nails, I have been a bit obsessive about taking care of them, which has paid off. I've been using a nail conditioner/protector that works wonders!

5. I'm finally rid of my stubborn plantar wart! I've had it for over 5 years, and nothing that anyone has done to it has diminished it. Until now.