Sunday, February 28, 2010

Do you mind my asking where you get your hair done?

Saturday -- also known as "hair day" on my calendar -- arrived and I spent most of it resting. It was that third day after my second chemo treatment and it was pretty much following the pattern of hitting the wall and feeling like all the energy had been sucked out of my chemically altered body. My appointment at the hair salon was at 3:00 and on the drive over -- about 40 minutes from my home -- I felt like I was starring in The Return of the Zombie. Worse yet, the strip plaza the salon was in didn't have a left-turn opening in the road divider, so I turned preceding the strip mall, parked next door and scaled a snow mound to get to the salon.

My stylist took me to a private room in the back and shaved the remaining tufts of hair from my head. As it turns out, I fall into the smooth (vs lumpy) head category. I looked like an egg. I don't like eggs. And I really don't like looking like an egg. I suppose there are worse things to look like, but if asked to name one -- sorry, I got nothing.

She brought out my newly arrived wig and I tried it on. Great color, she said. "It's so cute on you." I looked in the mirror and thought holy wig, that's a lot of hair. Remember, I'm from the fine hair/no body club. Now it looked like I was all hair with a disappearing face. You don't think it looks too wiggy, I asked her. Oh no, she assured me. Remember, we're going to feather it, trim it and thin it out a bit. First time in my life that "my" hair would have to be thinned.

First order of business was to make sure it was sized to fit my head. This entailed her sewing more lace to the lining, a pretty lengthy process. So, while she worked on that, I tried on a few turbans. I wanted something soft and comfy that I could wear around the house to keep my head warm. I found one that I liked and added it to my "cart". While the stylist continued with the lacing, I asked her, on average, how long it takes for most chemo patients' hair to grow back. She said about 9 months to a year before there's enough to do any kind of styling with. Groan. I thought maybe four to five months. This wig was going to be a part of my wardrobe longer than I anticipated.

Once she finished with the lacing, I tried on the wig again. It was a good fit. She began styling, per my suggestions. Shorter around the ears, shorter and more ragged around the neck, a little more air in the bangs. She feathered it quite a bit and when she was done, it looked so different than when I first tried it on. "Not so wiggy now, is it!" she said. And she was right. It looked so much better. Still odd to me, having that much hair -- but so much better.

So, I left wearing my wig, and clutching a bag of purchases, including the turban, wig styling mousse, refreshing spray, shampoo and conditioner, brush, wig stand and some shea butter for my egghead. I reclimbed that snowbank and drove the 40-minute drive home. Whenever I pulled up even to another car at a light, I'd look over to see if the driver would do a double take and then start laughing. Nope. No reaction. They were either polite, or they couldn't tell it was a wig.

I wondered what Jeff would think.

He heard me come in from the garage and asked if I had my wig on. I ducked into the downstairs bathroom to make sure it hadn't spun sidewise, and was happy to see it actually looked better in the mirror at home than it had in the salon. I came up the stairs and Jeff greeted me with a big smile. Hey, this was going to be okay. And then he spoke: I like it better than your real hair.

Hmn. Is that a good thing? 'Cause ultimately you're going to be disappointed when my own hair returns, pal.

I wore it to church next day. My wig's first outing. It was warmly received. "It's darling." "I love the cut." "I wonder if I could get my hair styled like that."

Since then, I've actually had two complete strangers ask me where I get my hair cut because they love the style. I was tempted to whip the wig off my head and tell them to give it a try and see if it works for them. But I think that would probably freak them out. Most likely they've never seen a human egg before.

Wednesday, February 24, 2010

Retired tweezer for rent

In the whole chemo loss-of-hair promise, I was most curious to see if the stubborn chin whisker would be the last soldier standing. Like the cockroach is purported to be the only survivor of a nuclear holocaust, would the chin hair stand up to chemo devastation.

There are aspects of the body's natural capabilities that are astounding -- and for evidence of that one need look no further than its ability to prepare a body to house and nurture a baby for nine months. But the body also can be whimsical and finds itself funny when it really, truly is simply annoying. Ask a middle-aged man how amusing it is when his hair decides to leave his head and relocate to his back.

Or the pre- or post-menopausal woman who may leave home without her American Express, but never without her trusty tweezer. I know several women who have a collection of tweezers: one at home in the bathroom; one in the desk at work; one in every purse and, most importantly, one in the car for those really sunny days when the sunroof is open and a ray of natural light reveals an untended chin hair so long and now obvious that you'd have to turn sidewise to get through a door frame. This is usually immediately followed by a punch to the arm of appropriate husband, along with the exclamation, "Good God, why didn't you tell me?!"

He, of course, responds with the usual rejoinder: "What?!"

I can report that my legs and underarms are smooth as a baby's butt. One good pedicure -- in itself not a good idea because of potential infection -- and I'm ready for the beach.

Nose hairs? Yes, Chris was right. Gone. And my new nickname could very well be "Sniff". Annoying.

But, I am happy to report that I can temporarily retire my tweezers. Trust me, I've given it close inspection, in both natural and artificial light, out of disbelief. Unlike the cockroach, the chin hair is no match for chemo.

Now there's a celebration. As it turns out, chemo did not claim my eyebrows. They fell under the may-or-may-not category of potential hair loss. And I realize I'm fortunate to claim a spot in the may-not column. I can use all the expression I can get at this hairless point in my life.

When you think about it, and I know this sounds strange, but the eyebrow more resembles a cockroach than the chin hair does.

And if you really want to retire your tweezers, the only suggestion I can offer up is to....I can't even go there. You just have to look at it this way: Plucking = healthy. And my tweezers aren't really retired, they're just enjoying a well-earned rest, temporarily.

Monday, February 22, 2010

Somewhere over Omaha there's a head of hair with my name on it

My "cranial prosthesis," aka wig, was due to arrive on Thursday, at which point the retailer would shave the remaining wisps from my head, fit the wig and then thin it out and style it per my wishes. I was more than eager for it to arrive. The little black newsboy hat that had perched so jauntily atop my head just a few weeks ago had taken on a Linda Blair personality of sorts. With so little hair to anchor it, it would spin itself without provocation. It was becoming annoying. I was constantly yanking its bill back toward the front. I called the shop on Thursday. Did it arrive? No. They had received their shipment and CP wasn't a member of the party. They were sure it would be in on Friday.

I called Friday. What's the good word?'re not going to like this.

The shop stylist promised to call the supplier and get back to me. It seems that the supplier translates the word "overnight" to mean put it on the only thing not smokin' and let it crawl toward Chicago like the muskrat it resembled.

A strangle little whimper escaped me, like a balloon losing air. I mumbled something about being disappointed, thanked her for checking and resigned myself to a long weekend of bobbleheading, followed by more hat anguish the following week.

Ten minutes later the stylist called me back and told me she had called the supplier, told them I had gone ballistic (why didn't I think of that!) and they'd better assemble another one pronto and overnight it to arrive Saturday. Would I like to set up a 3:00 Saturday appointment?

I pictured myself going ballistic, ala Patty Hearst -- calling myself Tanya, wearing a wig and toting an Uzi, and holding up banks. A great little short-term plan to beef up my 401K funds and a pretty effective way to relieve stress.

I know, I know. The plan is flawed. With my bad knee, I was sure to have some difficulty making a fast getaway, and it looked like I was going to be busy at 3 p.m. that Saturday anyway, getting that wig to land safely in Chicago and on top of my head.

Ballistic may not be my style, per se, but it was a nice little fantasy while it lasted.

Sunday, February 21, 2010

Are you okay?

The fatigue sets in during the weekend -- at least that's the way it has been, based on my first two chemo schedules. Chemo on Wednesday. Take off work Thursday. Go to work Friday. Pay for it on Saturday and Sunday. It all works out. I have the weekend to regroup. Besides, mine is not a physically demanding job. I can sit and think in my office. Or I can sit and think at home. Sometimes, I've been known to do both. But never at the same time. I'm talented, but not mystical. I can be explained.

Of course, there is the stress factor to consider and I think that's where I go a little south. I have a departure time in mind when I come in on these post-chemo days. You know, "I'll be out of here by 2:00 at the very latest. Not a minute longer." And then 2:30 clicks in and I'm still there and haven't eaten lunch yet and someone notices I'm looking a little flushed. "You okay?"


Alone on the street, if you saw an approaching stranger, looking this fried, would you think, "Hey, that person looks okay!" Or would you discreetly cross to the parallel sidewalk and think to yourself, "Whew, that was close"?

Of course, you would. But there really is only one appropriate and expected answer to the "are you okay" question, and that, of course, is the one I usually give: "Yep, I'm fine. Better than I look, thank God!" Ha.

And, it's generally true. I'm okay. But when I hit that wall, it's my own fault. And I need to learn to put on the brakes before the wall comes screaming up to meet me.

I've also learned, sort of, to not use this as a time to catch up on long-delayed clean-up projects at home. Yes, the crawl space is ridiculously jammed with seasonal items that have been held prisoner for at least a decade. Another decade out of the daylight isn't going to kill them. Well, actually, it probably will, but at this point, do I care?

My project, my own personal corporate mission, is to get the rest I need and to get well. Everything else will still be waiting for me when the energy returns -- whenever that is. I had it once. It will come come home again, if I don't burn out my own candle.

Excuse me while I go burn that pithy little bon mot into a wood plaque for my office.

And yes, thank you, I'm okay!

Thursday, February 18, 2010

Hello, Kitty!

A few days before my second chemo session, a package arrived from my granddaughters. Inside, a Build-a-Bear kitty, dressed in pajamas, along with a note, signed by 9-year-old Chloe and 7-year-old Livy. Kitty, named "Kisses", was to accompany me to my treatments. In the note, Livy told me to press its right paw. And, of course, I did. I was rewarded by their sweet voices saying "We love you, Grandma Sandi!"

The girls' Grandpa Jim on their mother's side had successfully battled Non-Hodgkins Lymphoma the year before, so Chloe and Livy were all too familiar with cancer and chemo treatments, but also, fortunately, aware that there are happy endings.

So "Kisses" shared my recliner when I went for my second chemo session, three weeks down the road from my first session. Jeff took a picture of me in my bobbly black hat, and chemo tubing, and Kisses in her pajamas so that we could show the girls. Once again, no adverse reactions. No warm rush, no whistling in the ears. Nothing. At least for me. Kisses seemed to handle it fine as well.

Again, I took the next day off of work, just in case I might experience side effects. But, just like the first time, I was fine.

I had really been struggling with my right knee in the last week preceding my second chemo session. Every time I stood up in my office, I'd have to hang onto my desk before taking a step because that right knee wanted to give out underneath me. I was limping noticeably and feeling like I was turning into a human junkyard. I finally got relief when I started my pre-chemo steroids, the Dexamethason. Immediate relief -- no limping, no pain. It was amazing.

I asked Dr. B. if, after the 4-steroid pills-a-day regimen before, during and day after chemo, I could continue taking just one steroid pill a day until I was through with chemo and could get the knee attended to. She agreed I could try that.

It worked. I knew the knee was still compromised. I knew it was not cured, but I couldn't feel its pain. Still a junkyard, but you could kick my tires now and not bring me down. You'd better be able to run away fast afterward, however, because, according to Jeff, those steroids were making me cranky!

Wednesday, February 17, 2010

Wigging out

The odd thing that preceded my hair's sudden departure by two to three days was a scalp tenderness. I likened it to what I thought a concussion might feel like. It was actually tender to the touch. And I suspected that might mean that fallout was imminent. Sort of like the hair threw itself a going-away party, overindulged and stuck me with the hangover headache.

The headache left about the same time as the hair. But the hair fallout became really annoying. I was constantly inspecting my shoulders to see if I was shedding. And shampooing each day was, of course, becoming a longer process. Soak, lather, then spend 10 minutes removing the hair from my wet hands. Rinse. Remove more hair from my hands. I put up with it for a week and wore the hat to work. Went to TJ Maxx (like the best garage sale in the world) and bought a couple more hats -- a white cotton summer one and a purple felt hat with a red band. I wore it when we went out to breakfast one morning and was asked if I was a member of the Red Hat Club. No, I responded, I'm a member of a quite different club (one that no one really fights to get into).

It was time to check out that cranial prosthesis. I stopped after work at a hair salon that specialized in wigs for chemo and alopecia victims. My own hair stylist had suggested that I go with human hair, but I actually liked the acrylic wigs better. The maintenance was easier and styling was not required. Wash it and it falls right back to its style. I tried on several and settled on one that had a similar length and cut to my own hair (only better) and had a little more blond highlighting than what I had been sporting. They ordered it for me and I would have it in a week, at which point it would be customized to fit and trimmed as I wanted it.

Finally came the weekend and I decided to just speed up the process and pull out as much hair as I could. It was surprisingly easy and I filled up the sink with it. What remained made me look like the man in the moon peeking out of cirrus clouds. Just a few wisps on the top and sides of my head. I can't tell you how attractive I felt. There was no sobfest, but I would have to say it wasn't the highlight of my week. I was mentally prepared for it, and it's a temporary, albeit admittedly depressing, situation. Of course, the problem now was that with so little hair, my hat tended to bobble on my head. I kept adjusting the brim to keep it centered. Terrific. Now I'm a balding bobblehead.

It was beginning to look like a pretty long week 'til that cranial prosthesis arrived.

Tuesday, February 16, 2010

Uh, I don't think that's going to be a good look for me

Pressed to name the potential chemo side effect I was most anxious about, I'd have to point to the asset I've invested in the most -- the tinted, highlighted hair on my little round head -- and admit I was curious about the exact date of its impending departure. How would it begin? A little here and there -- or a mass exodus? Would one of Chicago's famous gusty winds blow the hair right off my head and send me chasing it down the sidewalk, trying to step on it so it couldn't keep tumbling away? "Hey, stop that hair!"

Would I get up in the middle of the night for a pit stop and find, like Hansel, I'd left a follicle trail so I could find my way back to bed? Would I lift my head to turn off the alarm one morning and discover my whole head of hair had stayed, intact, on the pillow. Aargh, that's too creepy to even think about.

The irony is that I've fought with my uncooperative, mind-of-its-own hair my whole adult life. How could a body that forever struggled to be thin be topped with a head of thin hair with no body. Where is the justice?! Where is the poetry in life?

If choices are made for us from the predetermined columns, i.e, "Sorry, here's your chubby-prone 5'2" body, along with a lifetime supply of carrots, celery and rice cakes," then a fair sense of play would dictate that the following offering would then be extended: "Now go on and grab yourself a lush head of thick hair from column B. You've earned it."

"Oh, and by the way, one day your daddy will invent post-it notes and no one will care if you or your hair is thin because you'll be stinkin' rich."

But not only didn't my daddy invent post-it notes, he never even saw a post-it note in his lifetime. So, here I am, both feet firmly planted on the middle ground of the middle class with a head of hair that needs to be gelled, gooped, spiked and sprayed into submission -- and even that is only temporary before it returns to its limp roots (sorry). And, as I battled it one post-chemo morning, it occurred to me that in another week or two or three, I might be wishing I had that stubborn mop to go to the mat with.

And then, on the 17th day after my first chemo session, in the shower as I scrubbed my shampooed hair, I came away with what looked like a bird's nest in each hand. I plastered it on the shower wall so it wouldn't clog the drain and ran my hands through my hair again. More clumps. Aha, "hair" we go!

The odd thing was that towel drying my hair didn't make it fall out. But I couldn't style it with a comb, brush or my hands without it coming out in tufts. Fortunately, I had bought a black newsboy soft felt hat and it became my new accessory all week.

I've been told, and actually I've seen it happen, that often times chemo patients' hair returns much nicer than their original hair -- thicker, wavier, a prettier color. It's a bit of a tease, because sometimes it only stays that way for a year before returning to its tired old self. But, I'm going with it. I'm expecting it. I'm choosing that lush head of hair from column B, and the sooner it gets here, the better. Because I look like a frog in a hat.

Sunday, February 14, 2010

Warning! Day 7: the world is your personal petri dish

I do not know why it works this way, but nevertheless, the reality is this: seven to 10 days after receiving chemo, the patient's vulnerability escalates as his/her (my?) white blood count plummets. Of course, the purpose of getting the Neulasta injection after each chemo session is to keep the WBC from said plummet. Naturally, I hoped it would earn its no-doubt hefty price tag and do its job efficiently. As extra insurance, I followed the rules.

During that seven to 10 day period, which for me was the following week's Wednesday through Saturday, I was advised to only eat fruit with a a peel, a la bananas, oranges. I avoided salads, people with visible cold symptoms, eating anything without washing my hands first or using a disinfectant. I opened outside door handles with my gloves on; inside door handles with a paper towel. I even used a paper towel to turn off the bathroom faucets after washing my hands. I have turned into a female Howard Hughes -- with much shorter fingernails.

I tried to shop in off hours, avoiding big, germy crowds. I am embarrassed to tell you that, while walking down an aisle in Target, I saw a young boy sneeze three times in the aisle I was about to cross so I pulled my jacket over my mouth and held my breath as I passed through the contaminated air.

I had been given a thermometer at the oncologist's office and was told to take my temperature on occasion throughout those three days. Anything over 100° needed to be reported to the doctor immediately. Actually I only took my temp twice. It was normal both times. I've always known when I have a fever. It's not just chills for me. It's a headache and painful eyes. Fortunately, I was not experiencing either in my "hey, look, she's vulnerable" time zone. The germs were asleep at the switch and I skated right on through unmolested.

Other than the nosebleed(s). I've never had a nosebleed in my life. Isn't that odd! Wouldn't you think at least one? Nope.

And then I had two. One on day 8 and one on day 9. Not so surprising actually. Chemo dries out the nasal passages. It was 5:15 a.m. and I was getting ready for work. I blew my nose and suddenly had a small gusher. Kleenex wasn't stopping it, so I grabbed a cotton ball and stuffed it up my nose. I figured if I couldn't get it stopped in 15 minutes, I'd wake up Jeff and we'd head to the emergency room. This must be one of those possible bleeding side effects they warned me about.

And then I remembered one of the first things that needed to be done at work that morning was making sure we eblasted an advertiser's important announcement so that it went out while the attendees he wanted to reach were still at the big trade show. Problem was, his announcement had been sent only to my email address late the evening before. If I was sitting in the emergency room, no one at work would have access to that information for the eblast.

So I fired up my laptop and with my eyes aimed at the ceiling so that gravity could not have at my nosebleed, I prepared to forward that email, with instructions, to one of my designers, along with a note that I might be in late due to unexpected nosebleed. I did a quick check before hitting the send button to make sure I'd had my fingers on the right keys -- and then sent it off through cyberspace. Hah -- who's got chemo brain!

Mission accomplished. And best of all, no splashdown. The nosebleed was no more. Crisis averted. Day 9's nosebleed again was initiated by a nose blowing, but it was even shorter lived and that was the end of it.

Come Sunday, the petri dish was closed and the world was pure again. But I still open the doors to it with a paper towel.

Saturday, February 13, 2010

And on Sunday I arose from the dead

If the napping saga of Saturday was restitution for my overdoing it on Friday, Sunday was my day of reawakening. I felt good when I got up that morning. Arose early; made breakfast; read the paper; got ready for church -- and didn't need a nap in between any of those activities. The zombie had stolen away in the night and I was back!

I had made it through my first chemo weekend with little damage to show for it. Just an occasional tingling in the lips. No mouth sores. No nausea. Even though I normally register on the reptile side of the dry skin vs oily skin scale, I hadn't noticed any further sloughing than normal. My hands and feet have been known to actually peel from dry skin or nerves, or a combination of both. It would be interesting to see what developed there depending on whether or not chemo decided to aggravate or help that condition.

The music in church that morning was particularly inspirational to me and did what it sometimes does...made my eyes water. Whether that was a "Wow, I really do have cancer and just had my first chemo experience" moment, or just a religious experience, I don't know. Perhaps it was a Sunday combo. But the music and singing moved me, and I was grateful for it.

Jeff and I decided to have a nice late lunch/early dinner to celebrate his return from Arizona and my tolerating my first chemo treatment so well. We took a short drive up to Wisconsin to dine. Somewhere between the salad and the third bite of filet mignon, I had a bout of take-my-breath-away heartburn. I'd forgotten about that warning. Chris, my chemo administrator, had mentioned that some people complain of heartburn.

Complain might be too mild of a word. I had the waitress package my meal and we headed for the nearest drugstore. Fortunately, since Walgreen's corporate philosophy is to plant a store every quarter mile down the road, we only had to go one block to find one. Jeff ran inside and bought a large bottle of TUMS. I chowed down three and they were pretty effective, pretty quickly. I've carried them in my purse ever since.

Later, I realized that the baked sweet potato I had chosen to accompany my steak was probably not a good choice. I love both sweet potatoes and edamame, but they are both major sources of estrogen, and I suspect that is something I need to avoid. I must make a mental note to ask my oncologist about that.

I also drank a grapefruit Izze drink and then later read that grapefruit juice can interfere with the effectiveness of chemo drugs. Really? Who knew there were so many nutritional rules to this process. Perhaps meeting with a nutritionist would be a smart decision.

There are a lot of support meetings and services available to cancer patients and I hadn't taken advantage of any of them. Between working, medical testing, doctor appointments, treatment and just plain R&R, I hadn't found the time. Perhaps I needed to make the time. I also needed to figure out how to factor daily work-outs back into my routine. I knew there'd be serious payback for letting that slide too long.

Well, the solution was easy. I just needed to find longer days.

Thursday, February 11, 2010

Yeah, I'll get right on that, but first...a little nap

Saturday morning I awoke reluctantly, feeling like I'd never slept, but I knew I had -- straight through the night, thanks to the Lorazepam pill. I was dog tired, as the expression goes. Being that it was the third day after my first chemo session, perhaps that was the way I was supposed to feel. Or, perhaps it was my God-smack for working a 10-hour day on Friday. "Hey, wise up!"

Like in the carnival swing-the-hammer-ring-the-bell game, I had swung too hard and blown the top off the scale. Not only did I have to pay for it, but I didn't win any prize, to boot.

I had a little breakfast, noticed my lips were a bit tingly (chemo!), read the paper and called Linn. I'd been a little overambitious in my plans for Saturday and decided to cancel. She was fine with it. It was a good day for relaxing and reading a book. I thought so too. I read a few pages and took a nap.

Got up a couple hours later and had a snack. Read a few more pages. Took a few more naps. And so it went all day long. Every activity was balanced by a nap. Do some laundry, take a nap. Watch a movie, take a nap. Dust the furniture, take a nap. Take a nap, then take another nap.

At least when I had to leave at 11 p.m. to drive to Milwaukee and pick up Jeff at the airport, I'd be well rested. Or so I thought.

It's a 45-minute drive from our house to Milwaukee's Mitchell Field and an easy one, at that, via expressway. Yet, that night, it seemed like it was taking hours to get there. All right, who hijacked Milwaukee and shoved it further north? If my eyelashes were getting sparser, why were my eyelids getting heavier?

At last I arrived and Jeff was curbside. He took one look at me and said, "You look beat. How about I drive home."

Good idea. Wearing a winter coat over pajamas, I got out from behind the wheel, walked around the car and headed for the passenger seat. An airport guard headed toward me to indicate I needed to move the car, but she took one look and suspected she was about to confront someone who not only might not be from this planet, but might also be hostile, and thought better of it. She chose wisely and walked away.

After having just driven 1800 miles in two-and-a-half days, Jeff drove the 60 miles home while I took another nap. I don't know if my Saturday sleep totals would equal what our cat Riley logs in a single day, but I imagine I came pretty close.

Wednesday, February 10, 2010

Perhaps I stayed too long at the fair

The alarm went off at 4:45 a.m., Friday, day two after my first chemo treatment, and I answered the call. I did a quick survey and all systems seemed go, so I got ready and left for work at 5:30 a.m. I'd be sensible and not push the envelope. I'd been told that sometimes fatigue sets in more on the second or third day after chemo. So, if I ran out of steam by noon or 1 p.m., I'd head home and get some rest. Not a problem. Piece of cake. Don't have to tell me twice.

Well, you know how that goes. You can have just four items on your to-do list and not even accomplish one, as some project comes along and highjacks your whole day. That's the way it is in the deadline-defined world of publishing. Suddenly -- wherever does the day go -- it was 4:30 in the afternoon and I hit the wall. Shaky and pale, I looked like a candidate for the dead zone.

Apparently, I have to be told three times.

I drove straight home and hit the bed for a few hours. About 7:30 p.m., I awoke, had a sandwich, wrote my second blog entry and called it a night again around 9:30. Even though I still had no nausea, I took one Lorazepam to make sure I slept soundly. I had made tentative plans for Saturday morning with Linn to help take down Christmas decorations at our church, grab a little lunch and maybe do a little shopping. Plus I had to pick up Jeff at the Milwaukee airport at midnight Saturday, so I knew I'd better make sure I had a good night's sleep before Saturday rolled in.

There were no fireworks when I closed my eyes that night, but as I slowly drifted off, I wondered if the few pings I felt here and there were just synapses firing or a message from my chemo, "Hey, guess where I am right now!'

Whatever. I knew where I was right then. In bed. Drifting. I went with it.

Tuesday, February 9, 2010

And so I came a blogging

The day after chemo found me much better rested, thanks to the Lorazepam pill I had taken the night before. It didn't appear nausea was going to be a problem for me, thank goodness, but I was definitely in need of the sleep benefit that it promised -- and apparently delivered.

I felt I was just a tad unsteady on my feet when I first got up. Not dizzy, just a little off balance, and it was a short-lived reaction. My knee felt supportive after two solid days of being on the steroids. It was a mask, and I knew it. The knee damage was still real. I just couldn't feel it.

So far, so good. Nothing on the list of possible and icky reactions was reaching out to grab me by the throat and shake me silly. I didn't have much of an appetite, but I ate small amounts anyway. I thought my face was a bit flushed, as was my neck, but it always is -- my neck, that is. Thyroid related, I imagine.

Jeff had made it to St. Louis before the snow slowed him down, but he was on schedule and making his way carefully toward Oklahoma City where he would spend Thursday night. I was relieved he was safe. He was relieved I was okay.

Linn stopped by for a short visit and she too thought my face looked a little ruddy. Like a wind burn.

I had taken the day off of work because I had no idea how I was going to feel post-chemo -- good, better, best? Bad, worse, really lousy? As it turned out, I probably would have been just fine going about my regular routine. So, I checked and responded to work email, did some laundry, read, napped and decided to do something my friends had been encouraging me to do since I began relating to them, via emails, my breast cancer saga. That night, I started my very first blog -- the one you are reading right now. The one thing that had delayed me in my blog creation was tagging it with a catchy name. I had asked my son Scott for a suggestion and he came right back at me with Breast Wishes. I liked it. I used it.

The weekend before I had written a short play for my church's kick-off dinner celebration of its 150-year anniversary. I hadn't written for awhile and that script barely whetted my creative appetite. I wanted more. The blog delivered. It was cathartic. It was fun for me. And it will serve as my memory when I look back and try to recall a year or more from now exactly what was happening to me at this point in time.

I search, usually unsuccessfully, for the reasons, predetermined or otherwise, things happen in this life -- be it mine or some stranger's. It's why I'll watch LOST through the very last episode, hoping for the big reveal, but enjoying the journey, the guessing, nevertheless. Perhaps someone who has recently been diagnosed and is struggling to get a handle on it all will stumble across, or be led to, my blog and discover they too can get through this. It's not a barricade, more like a detour. Sooner or later, we all get handed a challenge. And we deal with it.

If I can help, just reach out and tap me on my bloggin'.

Monday, February 8, 2010

And the rockets' red glare

After the two chemo drugs have finished their drip, there's a follow-up bag of hydration. Then, for dessert, an injection called Neulasta, a white blood cell booster to help fight off infection. Neulasta carries its own little warning -- ruptured spleen (sometimes fatal) and a serious lung problem called acute respiratory distress syndrome have been reported. Begs the question: once? few hundred times? two out of three patients? Also noted, about 30% of Neulasta recipients experience mild to moderate bone pain. How would I know? I came through the door with existing knee pain.

All of these treatment ingredients carry a set of risks, except perhaps the hydration, and the Neulasta is part of the package -- designed to boost the patient's immune system and keep her on her chemo schedule.

So, a shot in the arm, removal of the pic line and I was ready to be ejected from my recliner and sent packing. I was given two prescriptions: Prochlorper for nausea and vomiting, and Lorazepam, also for nausea and vomiting AND SLEEP. Yes, I could use some of that. Linn drove me home and said she'd check on me the next day.

I came home to life as usual. Packed up some sandwiches, drinks and snacks for Jeff's road trip, while he took my prescriptions to the drug store and got them filled for me. We had picked up his customer's car the night before and I was determined to get him out the door by 7 p.m. so that he would be ahead of the oncoming winter storm that threatened to be whipped along by 45 mph winds. The flat plains that I-55 cuts a swathe through from Illinois to Missouri are more than willing to blow that snow right back on the highway when you least expect it. With most of my relatives still located in St. Louis, I've made that boring yet treacherous drive through combinations of snow, sleet, ice, fog and wind. I didn't care for it.

Jeff cooperated and was ready to roll. I assured him I was feeling no ill effects. I'd have a light dinner, read for awhile, take the pill that promised no puking plus sleep, and hopefully recoup some of the shut-eye I had been denied the night before.

Jeff wasn't exactly happy about leaving town at this particular moment in my life, but I was fine with it. If I was going to feel really lousy, I'd rather be alone. If I felt good, I'd also appreciate some alone time.

I got ready for bed and about 10 p.m. called Jeff, who was almost to Springfield, IL, and still ahead of the snow. We chatted for awhile and then said our goodnights.

I turned out the lights as my cat Riley snuggled up against me, per usual, and waited for sleep. It didn't take long. The Lorazepam worked its magic. There was one interesting technicolor event though, before I nodded off, where I swore I was seeing, through my closed eyes, fireworks. It was rather pretty. Certainly way more than puking would have been.

I just enjoyed the show.

Sunday, February 7, 2010

Serious side effects may occur

The nurses and techs who handle the chemo drugs use gloves so that an errant drip doesn't splash on their skin. You'd think that kind of toxicity coursing through a tube and into your veins would turn the irises of your eyes into pinwheels or curl your toes into toboggans, but the reality is I felt nothing. Maybe a little warmth, but that could have been just my imagination. I suppose it would be a totally different experience if I'd had an allergic reaction, but I didn't.

It's a two-bagger chemo combo called TC, made up of one bag of Taxotere and one bag of Cytoxan (cyclophosphamide), neither of which sounds friendly. In tandem, they prevent cancer cells from dividing and growing. The treatment is systemic and attacks cells that reproduce rapidly, like cancer cells. There are plenty of healthy cells that reproduce rapidly as well, like those in the mouth, intestines, scalp -- hence the potential for side effects.

So while these "benevolent toxins" made themselves at home in my own personal domicile, I ate my lunch, sipped my iced beverage and read my book. As one bag ran its course, it would be disconnected, the line flushed and the second bag connected.

Linn arrived at 2:30, pulled up a recliner and took out her knitting, and between the two of us we tag teamed Chris, my chemo administrator, with our flying wisecracks. Chris was game. She included Linn in the process of reading me the possible side effects I could experience -- because chemo brain -- a sort of foggy way of thinking -- could be one of them, and it might behoove Linn to remember that for me.

There are no entries for a chemo plus column. Here are the possible negatives: nausea and vomiting; loss of appetite or metallic taste; dehydration; very dry skin or nail bed changes; fluid retention/edema; neuropathy in fingers or feet (numbness, tingling); bleeding; fatigue; hair loss; diarrhea or constipation, with Senokot being recommended for the latter. And let me just say this about that, if you're having chemo -- get the Senokot.

Those are just the annoying side effects. If I was to develop any of the following, I was to call the doctor immediately: Shortness of breath or chest pains; signs of infection or a fever greater than 100°; mouth sores; nausea, vomiting, diarrhea or constipation for 24-48 hours; or signs of bleeding. I was to drink two to three quarts of fluid daily and take particular care in the 7 to 10 day period following chemo when my white blood count would likely plunge and leave me vulnerable to infection. It was advised, during that period, to avoid crowds, eat only fruits with a peel and keep a brick wall between me and anyone with a cold.

Chris advised me that, in addition to losing my hair, I might also lose my eyelashes, eyebrows and nose hair. I smiled at the nose hair but she admonished me not to celebrate that loss. It is our nose hairs that keep us from having runny noses.

I began to realize how my dance card would remain empty as I turned into a hairless mole with a drippy nose. If I was lucky, maybe my chemo brain would not store that memory.

Saturday, February 6, 2010

Hello. I'm here for my drugs

I suppose every option in life would allow one to make entries into the plus vs. minus column. Definitely in the plus column of taking the four steroid pills the day before my first chemo session was the minimizing of my right knee pain and maximizing of its mobility. In the minus column: Insomnia. Not a wink of sleep Tuesday night. Well, maybe one, most likely right before the alarm went off at 4:45 a.m. Maybe I would be able to nod off during chemo. But first, I had a 5-hour work morning ahead of me, and I was pretty sure sleeping on the job would not go into their plus column.

One thing Dr. B. had advised in our discussion of chemo treatment and its effects was that bringing something icy cold to drink, or a cup of ice to chew upon, serves to close the capillaries in the mouth and prevent mouth sores from being one of the adverse reactions. I filled a big plastic lidded cup at work with ice and took off at 11 a.m. to return home. Initially, I'd had every intention of driving myself to and from the doctor's office, but neither Jeff nor my friend Linn thought that was a first-rate idea. Jeff planned to take me and keep me company at the beginning, then leave and head for home to get some rest. He was supposed to leave at midnight and drive a customer's car to Scottsdale, AZ. Complication: a big snowstorm scheduled to blow through Illinois and down through Missouri, beginning around midnight. I wanted him out of the doctor's office and home by 1:30, so that he could sleep 'til 6 p.m., have some dinner and be on the road by 7 p.m. that night. Besides, Linn was coming to sit with me 'til the treatment ended when she got off work about 2 p.m. She'd volunteered to bring me home.

I threw together a sandwich, banana, orange, cookies, water, soft drink and a good book to read. All together, I'd be engaged for about four-and-a-half hours at Dr. B.'s office. She wanted the drip to proceed slower than usual for the first treatment so that she could monitor my reactions.

First thing I noticed when we arrived was a basket on the office counter of colorful knitted hats that had been handmade by a group of women who donate "comfort" items for breast cancer patients -- like the seatbelt pillow I'd been given upon diagnosis. Fully aware I'd be needing a head warmer sooner than later, I picked a multi-hued blue one. It warmed my heart as well that perfect strangers do such thoughtful things for other perfect strangers. I suspect, however, that cancer of any type invades every family at some point and makes us all less strangers.

I was discretely weighed and then cuffed for the blood pressure arm pumping. With all my testing since November, I'd had my blood pressure taken on a regular basis and it had elevated from my normal and acceptable range. I attributed this less to the stress of illness than the fact I had not worked out at the club since early November. Between surgery and then both knees imploding, I had entered into the longest slothful era of my adult life. Obviously, I was starting to pay a penalty for that.

I was the only treatment patient that day, so I had a choice of recliners in the room. Jeff settled into one as well. In charge of my chemo treatment is a friendly, knowledgeable, efficient and altogether nice and fun woman named Chris. She inserted the pic line in my left hand and drew blood for the pre-treatment blood panel, which is run on the spot. The results were good. All systems go.

I leaned back, with my "picked" hand resting on a pillow on my lap and watched as Chris started a drip of anti-nausea medication -- more or less a liquid version of the Dexamethason I was taking in pill form. I made sure to keep drinking from my icy beverage, even though the chemo hadn't begun yet. Just like I didn't want lymphodema as a breast cancer souvenir, I didn't want mouth sores as a chemo bonus.

Dr. B. stopped in to see how I was doing and I introduced her to Jeff. We talked for awhile and then I encouraged Jeff to go home and get some sleep. I had my lunch, I had my book, I had my drugs and I had some quiet time. I was fine.

Friday, February 5, 2010

You didn't really plan on relaxing today, did you?

Tuesday, pre-chemo #1 day, dawned and I stuck with the plan. I took my two Dexamethason pills as directed, with food, and got to work at 6 a.m. I had a lot to accomplish, as I knew I'd need to leave at 11 a.m. the next day to make my noon chemo appointment -- and was then planning to take Thursday off as "possible reaction" day. I was still limping, of course, but I had resolved that whatever was torturing my right knee was going to have to be tolerated until I slammed the door on the chemo chapter.

And then at 11 a.m., I got a call at work from the nurse at the internist's office -- the one I had left a message for the night before. She was calling on behalf of the physician's assistant who had ordered the ultrasound on my knee after seeing me on Saturday. The nurse said the PA was concerned it might be a blood clot behind the knee and wanted me to get in to see the orthopedist referral right now. WHAT!?

The orthopedist's scheduler said she could squeeze me in at 1:30 -- but please get there 15 minutes early to fill out the raft of forms. I scrambled to get done as much work as possible, then made the 45-minute drive to get to my appointment. En route, I called Dr. B., my oncologist, and told her about this new wrinkle that might upset the chemo cart. She asked that I call her after my appointment and bring her up to speed.

The parking lot was jammed and I had to park a distance away, but I noticed that I was suddenly walking better than I had for a full week or more. I signed in, grabbed a clipboard with a book of forms to complete, and took one of the few open seats in the waiting room that probably accommodated 50 patients. While others might take 30 minutes and beyond to complete that many two-sided forms, I had it down to a science. They weren't dealing with a rookie here. In the past two months, I had filled out every possible medical form, sometimes at two or three different locations in a single day -- and I could fly through them like Apolo Anton Ohno on speed skates.

Fifteen minutes later, and smiling like the champion form lady, I handed back my clipboard and asked if the doctor was running on schedule. "Actually, he's running a little behind." All the good magazines were taken, but they had a rack full of find-these-items-in-the-drawing papers -- all different themes and designs. Must have been 50 different ones. I did all of them. The thing that tripped me up every time -- eyeglasses. I could find the banana, the fish, the hairbrush, the pen, the toothbrush, the apple, and on and on. Running a little behind? Fifty find the items, with long searches for spectacles!

At 3:30, they called my name and I was led to an exam room where I left my things and was whisked off to the x-ray room for a couple of shots of my knees. More pre-radiation radiation. I returned to the exam room and met with the doctor. He was young, he was honest and he was confused as to why I was there. If it was a blood clot, which it wasn't, that wouldn't have been his to fix, it would have been the internist's call. I did have a small baker's cyst. Could be fluid leaking from a tear in the meniscus. But, he assured me, the purpose of the ordered ultrasound was to determine if there was a blood clot. And there wasn't.

Now I was confused. Why had the internist's office thrown me into a drop-everything, could be a blood clot, go see the wrong kind of specialist panic? The orthopedist wondered the same thing. He manipulated the knee to see where the pain kicked in -- that old game. I told him that actually, just a few hours ago I started walking better than I had for weeks. Power of suggestion? No, he informed me. The power of Dexamethason -- the pre-chemo steroids I had taken just that morning. He could give me a cortisone shot in the knee, but the pills I was taking were accomplishing the same thing. He wrote out a prescription for me to start physical therapy when ready. If the knee got worse, I could come back for the shot, he could order an MRI -- but he realized I had enough on my plate with the chemo. I could deal with him in the future. And most likely will. I really like those find-the-item games.

On my way home, I called Dr. B. and gave her the wrap-up. After my pre-ortho-visit phone call to her, she had begun wondering as well why the internist's office would have zipped me off to an orthopedist if they thought I had a blood clot. A question for the ages, as I will no doubt search for a new internist in the near future. I told Dr. B. I would see her the next day for Round One of Sandi vs. chemo.

I went home, had dinner and two more Dexamethason pills and said a quick prayer of thanks that I wasn't in the hospital trying to dissolve a blood clot. How lucky can I get?!

Wednesday, February 3, 2010

Sorry, we're closed

Monday dawned and I was off to work early so I could then be off to my knee ultrasound in the early afternoon. I sat in the waiting room with other women who were waiting to be called for their tests and couldn't help but wonder if any of them were there for an initial scan to diagnose breast cancer. Impossible to tell. The tables and racks are full of magazines so that conversation isn't required. I read through two continued-to-the-back-pages articles before I was summoned. The ultrasound was quick and I was escorted back to the waiting room. The technician told me to have a seat and wait as my primary doctor wanted to be called immediately and told the results. One article later she returned and said it wasn't a baker's cyst and my doctor said I could head home.

Well, okay. Information in, garbage out. What was it then?

I returned home in time to hear a voice message being left on my telephone answering machine, asking me to call the doctor's office when I got in. I finally got through to the nurse who left the message and she told me the doctor wanted me to get an appointment the next day with a local orthopedist he was recommending. The nurse said she would do an immediate initial call and would also have the ultrasound results sent to the orthopedist's office. I told her I'd wait about 15 minutes before calling for an appointment so that she could pave the way first.

Fifteen minutes later, precisely 4:05 p.m., I called the orthopedist's office and got a recorded message that they were closed for the day. Aw, nertz. Now what? I called my primary doctor's office back and asked for the nurse. I got a recording. I left her a message too and then began to stew.

Tomorrow was pre-chemo day and that meant that I was to start a 3-day regimen of steroids: two pills, twice a day the day before, day of and day after chemo. An anti-inflammatory, Dexamethason is used to prevent nausea associated with chemo. I would need to take two in the morning, but would I be starting chemo on Wednesday? Would I have to postpone?

I didn't want to postpone. Oddly enough, I was psyched to begin the treatment process. Sooner started, sooner done. Sooner I got my so-called normal life back. Wednesday would mark about 7 weeks since my surgery and it seemed like the most life-affecting decision I needed to make in the next 24 hours should relate more to cancer survival than knee pain tolerance. I could hobble along for a few months more.

Come morning, I was taking those pills and that was that.

Tuesday, February 2, 2010

We're going to need to run another test

Saturday, the day after New Year's, I sat in the waiting room of my primary doctor's office and watched a couple of still-enjoyable episodes of Seinfeld on the flat screen TV, while waiting for whoever was available to see my swollen knee. I ended up with the physician's assistant. She maneuvered my right leg straight up in the air. That hurt? No. Bent it to the left. That? No. Bent it to the right. That? Sweet mother of...

She took that as a yes. Her opinion was that it could be a baker's cyst behind the knee. Or it could be a torn ligament. She wrote out an order for me to have an ultrasound on Monday. Somewhere in an insurance office board room, my name, with a big red "X" through it, was going up on a wall with a note underneath it -- DO NOT INSURE THIS WOMAN. Perhaps by 2011, I will have experienced an MRI, CAT scan, ultrasound and body scan on every barely functioning body part. It actually seems do-able.

So that meant that after work on Monday, I would have an ultrasound to determine what exactly was going on with the knee that now occasionally buckled and nearly tumbled me down the stairs. It had also become an annoying sleep interrupter every time I moved my leg. But with chemo looming on Wednesday, any kind of invasive curative was not going to be an option. And, beginning on Tuesday, I was to start a 3-day round of pre-chemo steroids. It was becoming transparently clear that it was not going to be a relaxed, stress-free entry into treatment.

Monday, February 1, 2010

So long, 2009. Don't let the door...

Somewhere in the world, someone -- maybe several someones -- will write down 2009 as their favorite year. The year they got married. The year their first child was born. The year they bought their first car. The year they made their first million.

I don't know any of them. In my circle of friends and family, 2009 was not a year to celebrate. My late mother's remaining sibling left us. Businesses folded. Friends lost jobs. Lost confidence. Lost savings. Lost hope.

I lost a tumor. Doesn't seem like that big of a deal in comparison. But, of course, everything is relative to what's happening in your own life. And, in my own life, I had experienced my first serious illness.

It just didn't seem like a year to close out in any celebratory way. But, the welcoming of 2010 called for some sort of recognition, so Jeff and I recognized it with a slab or ribs, followed by a slab of eclair cake, all courtesy of Barnelli's at Portillo's. So much for a healthier diet, but hey, it was a special occasion.

And we spent the evening watching a marathon of "Thin Man" movies on TMC. Absolutely smacks of a senior citizen's New Year's Eve gala, but I loved it! As a matter of fact, I loved it so much that I set the DVR to record the last two "Thin Man" movies in the evening's series because I knew I would only be awake to ring in the new year in NYC 's Times Square -- not in Chicago's Grant Park. I'd long been a fan of Nick and Nora Charles, but it was all pretty new to Jeff and he, like me, got a kick of the witty repartee, Asta the dog, and, of course, the requisite party scene at the end where, without fail, a suspect pulls out a gun and yells, "You'll never pin this on me!" (which, pretty much in itself, pins it on said suspect).

I also spent the evening icing my swollen, aching right knee. I'd been hoping to leave it behind in 2009, but it accompanied me, uninvited, right on into 2010.