Sunday, March 28, 2010

Gone fishin'

I made a full blog entry earlier today, but tonight I'm hanging the "gone fishin'" sign on my blog for the next four days as I head out on vacation. I return on Friday and have every intention of returning my attention to the blog by Friday night. That's the plan anyway.

So, to all of you, I wish as good a week as I'm hoping to have. See you Friday.

Sandi

Corned beef, cabbage and chemo

On most people's calendar, March 17 was marked as St. Patrick's Day, but my calendar had another entry: Final chemo session. It had been delayed from the week before because of the pneumonia complication. While others, whether Irish or far from it, were being served and over-served with green beer and Irish whiskey, I was having a different sort of cocktail, through a tube feeding into a vein in my hand. But I was okay with it. This was the last dose. Even with Irish ancestors by the name of Karnes on my dad's side, I was never a big St. Patty's Day celebrant. Not crazy about beer, nor whiskey. But I did like corned beef and cabbage. This was the first year I didn't prepare it. To be tender and tasty, corned beef needs to quietly simmer for several hours. By the time I got home from the chemo session, it would be too late and I would be too tired to initiate that process.

My last session was quiet and isolated. When I first arrived, the usual room where I received treatment was full. In the back room, where blood is taken for preliminary testing, there was also a recliner and we began treatment there. Even after the other room cleared out, I chose to remain where I was. I had my lunch, read a book and it was peaceful. Two different women came and went for blood work. One was newly diagnosed. The other had been cured for two years and was having routine testing done. There was an easy rapport and conversation among us, as if we were sorority sisters. Know where you've been. Know where you're headed. It tends to be a tie that binds, even if just for an afternoon.

Treatment completed, I thanked the nurses who had taken such good care of me and made my 3-month follow-up appointment. I felt like I imagine a released prisoner feels as I walked to my car. Time served. Released for good behavior. Oh, it felt good. In 22 days, my body could start the rebirth process. Hair could grow again. Heartburn could go wherever heartburn goes. My immune system could start rebuilding. Spring was coming to Chicago and it felt, to me, like my body was about to enter its own spring season.

The next morning I was the first to arrive at work -- about 6 a.m. As I rounded the corner to my office, I could see a pink glow emanating from within. A helium balloon's escape had been stopped by the ceiling above my chair. My lamp, phone, arm rests and monitor were wrapped in pink netting. A light pink frothy ribbon draped my walls. Pink balloons were everywhere. On my desk, pink plates, cups and utensils. Bottles of pink beverages. Platters of pink food. On the wall, a signed congratulatory note on completing my chemo treatments. I knew immediately this was the work of my staff. On my chair, from my boss, was a bag containing a beautiful pink shawl. I was touched beyond words. It was sweet. It was beautiful. It was fun.

Odd as it may sounds -- and corned beef or no corned beef -- I do believe this will go down as my favorite St. Patty's Day (and day after) of all.

Saturday, March 27, 2010

Sooner or later, you're going to have to pay for that!

Tuesday, the day before my 4th and final chemo treatment, I took the Dexamethason steroids in the morning and hoped there'd be less lurch walking by noon, which was usually how long it took for the numbing factor to kick in. It didn't seem as effective this time. My knees were slightly better, but I'd still have to stand a second at my desk before taking an assured step.

By the time I was 30, I had calcium deposits on my knees that made them creaky sounding when I climbed stairs, but no pain. I'd long been a tennis-playing fanatic and appreciate now, with the wisdom of senior thinking and reflection, that it must have driven my mother batty to hear me practice forehands, backhands and serves for hours by hitting the ball against the wooden garage door. I wonder how much restraint it took for her not to open the door and practice the skillet toss at her thoughtless daughter.

Fresh out of college, when I moved to Chicago, I became close friends with Sue, another tennis fanatic, and we played tennis nearly every day, from the time the snow melted off the courts to the day it returned and deposited a new layer. On 100° days, she and I would be the only two foolish enough to shake and bake in the punishing heat. After work, she'd zip down Michigan Avenue in her red Corvette, pull up in front of the Tribune, and I'd come running out, already changed into my tennis outfit. Off we'd race to grab an open court or rack up for next available. I was in the best shape of my life. But also not aware of the pounding my knees were taking. A couple of years of racquetball playing a decade later pretty much sealed their fate. I've often wondered if Sue would now be dealing with knee issues, but sadly, a heart attack stole her away nearly two decades ago.

And over the past 10 years or so, I'd had days where one knee or the other would blow during weight lifting or kickboxing or Zumba or whatever other physical activity I was signed up for in an attempt to move those dust-collecting size 4 outfits from the back of my closet to center stage. But I'd never had anything like this before. Not only tender to the touch, my knees were so painful that I'd wake up from a sound sleep every time I'd move. I'm wondering -- and hoping -- that when the last traces of chemo drugs have left my system -- along with the bone-marrow-boosting Neulasta drug that admits it intensifies joint aches -- I'll go back to having just mildly annoying knees and this will all be just a bad memory.

But first, I had my final chemo session coming the next day, delayed from the previous Wednesday. Supposedly, it takes 21 days for the chemo drugs -- let's call them what they really are -- toxins -- to leave the victim's system. Come April 8, 2010, it will be 22 days after my last chemo treatment and I'm penciling in a "Welcome back, knees" celebration. You're all welcome to join me. I'll even host a drawing with my tennis racquet, also long gathering dust in the closet, as the grand prize.

Thursday, March 25, 2010

So, I guess you won't be signing up for the marathon?

I finished the 10-day supply of Levaquin antibiotic on Thursday and was glad to be done with it. I had to take it with food or end up with a yucky stomach. Even food didn't necessary stymie the yuck factor. And I knew with the pneumonia being viral that the antibiotic was ineffective in that battle. But, I think the pneumonia battle was just about over before I even knew I had been engaged in combat. I was feeling much better. And the next night, around 10:30, Scott and the girls arrived. They were all jacked from the trip and there was lots of giggling before Chloe and Livy surrendered to sleep. Scott stayed up til about midnight with us and, except for the beer in his hand, it was like he was back home and staying up way too late for a school night. "Don't drink too many of those or you'll have a hangover in physics class!"

Jeff wanted to take the girls to breakfast and show them off at his favorite local egg joint, so I threw a beef stew in the crockpot and then got myself ready. We were taking the girls to a live performance of Sleeping Beauty at 10 am. Jeff and Scott made sure I got the aisle seat as both knees had decided this would be the perfect weekend to go on strike. I was hobbling and it just wasn't possible to disguise my stiff-legged walk. Jeff helped me on the exiting adventure out of Scott's pick-up so that I didn't land too hard on my collapsible underpinnings. So this is what it's like to get old, I thought. Just a year ago, I was burning off 700 calories at 5-a.m. hour-long Zumba classes. From salsa dancing to walker ready in a matter of months.

Scott had a Portillo's craving so we satisfied that request with lunch and then took the girls to Dollar Tree and gave them some shopping money for color/fun books, puzzles and whatever else they deemed worthy of purchase. I was happy for the low-key afternoon of playing Sorry, assembling puzzles, coloring in books and being able to rest my aching knees on a chair. The wig was resting in another room and I was wearing the soft velvet turban that I don at home. Neither of the girls had reacted to the turban, so I asked if they wanted to see Grandma the egghead. They both laughed and said yeah and really didn't react other than smile. They rubbed my bristly head and agreed it kind of felt like velvet too.

The next day Scott and I took the girls to Gameworks where they drove virtual cars, motorcycles and snowmobiles with enthusiasm and surprising skills. Maybe not so surprising. They're Wii kids. My knees were impossibly worse than the day before, so I perched on whatever open stools were available by each game and took a load off.

Monday I took off of work to spend the last day with Scott and the girls. And if your knees were uncooperative and on the endangered list, what's the one place you would avoid? Something mammoth that can only be explored on foot? Of course! Like, say the Museum of Science & Industry? I know. I'm an idiot. But I had told the girls about the million-dollar dollhouse and it was on their must-see list. And to tell you the truth, other than the unique City Museum in St. Louis, which we had explored the year before, there is no museum that attracts me more than S&I. And this was going to be the girls' first visit. I didn't want to miss it. Surprisingly, they did a fast spin around the dollhouse. Guess the idea of it was more enticing than the reality. But they loved the submarine and coal mine and whispering gallery and elaborate train layout -- you name it. We walked it all. Well, they walked. I lurched, like Dr. Frankenstein's monster.

But the one thing I cannot miss on each visit is the chick hatchery. There they are on one side, the newly hatched naked little chicks, lying exhausted and shell-shocked (sorry) amongst the still intact eggs. Then in the other half of the oversized incubator, the fuzzy chicks, maybe a week or two old, zipping around their enclosure like they're turbo birds -- attracted by anything shiny that just might be food. I could watch them for hours. There was one little bird right in front of me who was kind of sprawled and weak looking and just couldn't keep his eyes open. The more I watched him, the more convinced I became that he was sick and on death's door. I looked over at Jeff and his return look told me he too thought we were watching this little baby struggle to live. I was ready to move on when suddenly the chick popped up and dashed to the watering hole. Did I mention I love these little creatures!

By 3:00 I was out of steam, so we told the kids to enjoy the rest of the museum and have a safe journey home and we headed back to Libertyville. I was in so much pain I was fighting back tears, but hey, I'd been down in a coal mine and a German sub and then witnessed the miracle of new life. You don't gain all that without a little pain!

Wednesday, March 24, 2010

Oh -- so that's what it is!

Monday morning I headed to the local facility for a quick CT scan before work. Some people start their day with coffee and a bagel. I start with CT scans. Nothing to drink this time -- and the contrast is done by injecting the tubing that feeds to the needle in my hand, so it's all painless and quick with a mechanical voice telling me when to take a breath and hold it.

I headed directly from the test to work and once there, I called Dr. B. to let her know that I had completed the CT scan and that, finally, my fever had gone away over the weekend.

To my surprise, she already had the results -- and a surprise. I had pneumonia. Well, of course, now it made sense. The shortness of breath. The little gasps that followed an intake of breath. While SOB was a side effect of the antibiotic I was on, it certainly went hand in hand with pneumonia. Yet, it had never occurred to me that I had pneumonia. Where were the precursors. I hadn't had a cold or a cough. Just fever. One day fever, next day pneumonia? Was this the workings of chemotherapy?

At that point, I was almost happy to hear I had pneumonia. We could finally name this devil and move on. Nevertheless, we agreed that postponing chemo to the following week would be a wise move. I had three more days of finishing the antibiotic -- Levaquin -- and since the fever was gone, it looked like I was mending all right.

My knees, on the other hand, were getting worse, but come next week, I knew the pre-chemo Dexamethason dose would give some relief there. The good news was that Scott was bringing our granddaughters in for the coming weekend -- and not only was that an occasion to lift my spirits, but now I wouldn't be dealing with post-chemo fatigue. Maybe this was all a good thing afterall.

Wednesday, March 17, 2010

We interrupt this blog to bring you BREAKING NEWS

Those of you who have been following my blog from the beginning know that I've been writing in past tense all along, since I started blogging 3 months after my diagnosis and ensuing surgery. But, just for today, I want to bring you current news because I'm in a celebratory mood!

Today I had my 4th and final chemo treatment. That's right. I am done. Fini. Kaput with chemo.

In a few weeks I'll start getting nuked when my daily radiation treatments begin, but the only side effects radiation offers are fatigue and sunburn. I can handle that.

So, today through the next 21 days, toxins will be traveling through my system, deploying their search and destroy talents, for the very last time. And then my hair can start on its return journey and my immune system can start rebuilding and my life can return to whatever it deems normal.

Excuse me while I go celebrate with some good old antioxidants like broccoli and berries and cheesecake (if the latter isn't an antioxidant, it should be).

Woohoo!

Sandi

Tuesday, March 16, 2010

Fever -- in the morning, fever all through the night!

I'd been on the antibiotics for four days and I was still one hot mama. Fever in the morning, afternoon and evening, spiking almost exactly 5.5 hours after I'd taken a Tylenol. I'd now been bedeviled by fever for 11 days. I was really worn out. And, judging by my constant thirst, I suspected I was losing the battle against dehydration.

Dr. B. had me come from my office right to hers on Friday. I had more blood work done -- additional blood cultures and a white blood count -- which was fine. The cultures would take 48 hours or more to determine if any new bacteria had developed. My blood pressure was 110/70 and I was thrilled. My BP had been running higher than normal (which used to be around 120/70) since I'd been sick -- and not working out was also a big contributor, I'm sure. While the 110/70 seemed good news, it was actually an indicator that I was pretty dehydrated.

Dr. B. was frankly stumped and tempted to put me in the hospital. The urinary infection was pretty mild and the antibiotic she had prescribed should have taken care of it and most any other infection that might be lurking within. My lymph nodes in the throat area were a little swollen, but I had no other symptoms of anything going on, beyond the returning temperature. She wanted me to have another CT scan of the lungs to see if the nodules or scar tissue that showed up in an earlier scan showed any signs of change.

And what if the CT scan comes up with nothing, I asked her. She replied that she would then send me to an infectious disease specialist. She couldn't treat what she didn't know. I understood that, but I was starting to get nervous about this. What if something sinister was cooking inside. An undiscovered tumor? I really wanted to be able to hang a tag on this fever inducer and get it shut down.

Dr. B. said she was tempted to put me in the hospital, but decided to give me a bag of fluids to counter the dehydration. She also canceled my 4th and final chemo treatment for the following Wednesday and asked me to just come in and see her on that date to determine how I was doing. If we couldn't get this under control, then maybe we'd just stop and end the chemo with three treatments. Or, if the fever went away, then we'd reschedule for the Wednesday after.

After I was rehydrated with the fluids, the nurse took my blood pressure again. It was 140/80. I had a new understanding of how dehydration affects blood pressure.

I scheduled the CT scan for first thing Monday morning. How bizarre that that same morning, the Chicago Tribune ran a big splashy feature on the dangers of CT scans and compared its supposed low-radiation effects to that of years of radiation exposure. And this was my second one in less than two months.

I figure in another year, I'll be a human night light.

If I was going to glow in the dark, I sure as hell better end up with some kind of an answer to the fever mystery. Fair is fair!

Sunday, March 14, 2010

Three strikes and you're out!

My third chemo session came and went, again without a hitch. I drove myself this time. No reason not to. Past history showed that I was fine -- no adverse reactions. I also didn't take off from work the day after. Other than being just a little shaky, I had handled both previous post-chemo days like they were just another day. I'd just make sure that I didn't stay beyond 8 hours at work the two following days. I held pretty close to that promise. I came home, took a nap, and sailed through pretty much unscathed.

Six days later, however, I came home from work with chills and a headache. Took my temperature and there was the evidence. 102°. My chemo instruction sheet told me to call in to the oncologist if I had anything higher than 100.5°.

Dr. B. was on vacation. The next morning, I got a call-back from one of her partners who was on call. He had me go into their local office for blood work. Jeff took me in. The white blood count was pretty good -- and that in itself was a good thing. They also drew blood for blood cultures and had me pee in a cup to do a urine culture as well -- both tests checking for any bacteria that might be a source of infection, thus the fever.

I was to come back the next day to see the doctor who was on call. I went in to work and left from there early in the afternoon for the appointment. I was still running a temp, but was able to bring it down with Tylenol. Once the Tylenol wore off, I'd spike back up to 101.8 or 102°.

The doctor asked me all kinds of questions to which I responded no. Throat looked okay. He looked up my nose (with a light, not a rubber hose) and said, "Whoa, really red." He wrote out a prescription for Flonase and we both hoped the nose was the culprit. The nose knows!

The nose might have been guilty, but it had some partners-in-crime. The temperature continued its morning, afternoon and evening spikes to 102° when the Tylenol wore off. That continued for a week. I left a message for Dr. B to call when she returned to the office and she was most upset that I had had a fever for 8 days. I wasn't enjoying it either. As much water as I was drinking, I knew I was getting dehydrated -- and exhausted from the fever battle. She told me there was a slight urinary infection and prescribed an antibiotic that would take care of that and any other troublemakers that might be brewing, even though the blood cultures came back negative.

I hoped this would send the fever packing. But it had no intention of leaving its accommodating host.

Wednesday, March 10, 2010

Hey, are you going to eat that?

Following my second chemo treatment, after a conversation with and ensuing approval from my oncologist, I stayed on one Dexamethason steroid pill a day to ease the inflammation of my right knee and keep me from hobbling so badly. It worked like a miracle cure. I was walking so much better with minimal pain. The trade-off? Actually, there were several. My face was so puffy I looked like Humpty Dumpty doing a chipmunk impersonation. Or a chipmunk doing a Humpty Dumpty impersonation. Either way, this also was not a good look for me and was enough to make sure that in any photo op, I'd be positioning myself in the back row solidly behind anyone who would tower over me (which is pretty much anyone I know).

Second on the list of why I stopped taking the steroid each day: I was grumpy. Under normal circumstances, two of the seven dwarves that I would never be cast for were Bashful and Grumpy. Happy? Yes. Sleepy? Maybe. Sneezy? In certain seasons, yes. Doc? Definitely underqualified, but better than Grumpy. I don't like me Grumpy. Jeff's not crazy about it either.

Third -- I was ravenous. It was like there was a hole burning through my stomach and if I didn't feed it, it hurt. I constantly felt yucky. And never full. If it didn't move, I ate it. If it moved slowly enough, I'd pounce and eat it. And if it moved fast enough, I'd give chase 'til my knee gave out. We're talking serious hunger here. I gained 7 lbs. in one week. The good news is I also lost 7 lbs. in one week, but more about that in a future post.

So, here was my life on steroids: A puffy-faced, disgustingly hungry, weight-gaining grump who was able to walk better.

It didn't seem a fair trade-off. After my third chemo session, I stopped the one-a-day Dexamethason. My face is looking more like my old self, my appetite is back to normal and I'm back to my charming self (although all the votes aren't in yet on that one). So, I hobble. Once I'm done with chemo, I'll get a cortisone shot and find the same relief without the side effects.

And, I've stopped chasing food. Unless, it's really, really slow moving.

Sunday, March 7, 2010

For God's sake, get me to the church on time!

The weekend before my first chemo session I had written a 20-minute play about the first 50 years of my church's 150 year history. The minister's daughter, who is active in theater, had done the casting, but asked if I could direct the play as she was performing in her theater group the same night as the church performance and wouldn't be able to attend. Coordinated with the play was the anniversary kick-off dinner. It was going to be a big night with several hundred people in attendance.

I had written the play so that some cast members would be seated in the audience -- popping up with comments. Hopefully that element of surprise would work to encourage laughs.

I'd never directed anything before, but what the heck, I'd written the play, so if anyone should know what its intended rhythm should be, it would be me. We did a read-through after church the previous Sunday, but some cast members were missing, so the first real rehearsal in the hall, on stage and with microphones, would be the Saturday morning of the dinner. It was a good two weeks after my second chemo session, so I was feeling fine. The rehearsal went reasonably well, despite some initial microphone feedback and some pacing issues. We'd meet back at the church at 5:00 and the play was to begin at 5:30, followed by dinner.

I had just enough time to run to the Dollar Tree that afternoon, pick up a few Valentine bag stuffers for my granddaughters, and still squeeze in a nap before "showtime". What I hadn't counted on was being held captive by a 94-year-old woman at the Dollar Tree. I had just picked out two big red bags with white feathers across the top as the goodie bags for the girls. I never even saw my impending tormenter approach. Just heard her as she sidled up to me and said, "Don't they have the cutest things here!" Good old female intuition should have warned me to just smile, nod and move on, but I suspected she was lonely for conversation. She probably lived close enough to walk to the store and made it part of her daily activities. Go visit with strangers at the Dollar Tree. I replied to her that yes, indeed, Dollar Tree was a great little store. It was the last time I was to hear my own voice. She wasn't hungry for conversation. She was desperate to tell her story to whomever would listen. If I took a step, she took a step, yet never took a breath in between sentences. It was kind of astounding actually. She told me that she was 94 and that her memory was still perfect, and she was right. Because she repeated her story, word for word, over and over again. Yep, that memory was flawless. Thirty minutes later, I could see my afternoon nap slipping away from me. Worse yet, when the church play began, it was not beyond the realm of possibility that I would be on the 50th round of this woman's life story. And so far the only shopping I had done was to pick out the two bags that dropped me like a fly into the spider's web. Finally, desperate (and embarrassed to admit this), I played the chemo card. I flat out lied to her. I held up my hand to indicate someone else wanted the floor and it worked. She paused and took a breath, and I told her I'd just had chemo and I was quickly running out of steam. I had to leave! She said something about "oh, poor thing" and I nodded and backed away. "Yes, poor thing. Goodbye now." And I cut and run. I'd be in church again in a few hours and could ask for forgiveness for lying to a poor old lonely lady. But -- I was free!

I did manage to snag a quick nap before we headed to the church. We sat at a table closest to the stage so that I could direct from there. I have to admit I was nervous. I'd never written a play for a church before. What if no one laughed? Worse yet, what if they laughed in all the wrong places?

But of course they didn't. This was an audience of church-going people. They were kind and generous with their laughs and the play and dinner went well -- with more than 300 hundred people in attendance. I could relax and enjoy the rest of the evening.

But I'm not sure I can ever go back to the Dollar Tree again.

Friday, March 5, 2010

During this performance, no wigs will be allowed to be removed!

The week following my new hair's arrival, I attended a dinner/play with three friends from my old place of employment. That was the main reason I would have been disappointed if the wig hadn't arrived in time. At a live performance, who wants to sit behind someone wearing a hat! "Hey, I came to see a play, not a Fedora!"

I had left work at 2:30 to have at least two-and-a-half hours at home before I was to meet them for dinner. I needed that time to let wiggy perch on its stand while my head cooled off. Plus a little nap wouldn't hurt either. So, I arrived refreshed, with a cool head, ready for the entertainment I had been looking forward to for weeks. And it didn't disappoint. My Fair Lady never does, but this was truly a talented cast and the stage set-up was amazingly clever and well done.

About halfway through the first act, however, I could feel trickles of perspiration around my ears. Warm? Oh my yes. When intermission came, I fanned myself rapidly with the Showbill. Michaelle, seated to my left, automated her Showbill and fanned me as well.

When the lights went down for the second act, I contemplated whipping off the wig, but it wasn't nearly dark enough and my lightbulb head might have been distracting to the cast members. "What is that thing?"

I made it through and thoroughly enjoyed the evening and the company, but I kept wondering if I'm this warm in the winter months, what is it going to be like in the hot summer months with that wig on my head? I'm thinking I need to find a little motorized, hand-held fan. Or a lightweight scarf that doesn't make me look like Carol Burnett's scrubwoman character.

Or move to Nome, Alaska.

Wednesday, March 3, 2010

Warning: Do not cook in that wig!

My new hair had been to church on Sunday and received my friends' blessings. Now it was time to introduce it to my work friends. The nice thing about starting before dawn is that by the time most people arrive at "normal" hours, I'm already at my station. I didn't have to walk past a group in the hallway and look back to see if they had stunned looks on their faces. I have to say I was nervous about it. A few weeks back, I'd had hair; then a hat; now more hair than usually sprouts on a human head.

My first encounter was in the lunchroom when I went to make coffee and three women who also gather to get the coffee started looked up when I walked in and all of them said they loved my hair. The style. The color. You don't think it looks too wiggy? Oh no. It looks very natural. Okay. That's good.

Back at my computer, I was working away when my boss and our VP of HR ducked their heads in and exclaimed they loved it! "Better than your own hair!" Where had I heard that before? I continued my survey, "doesn't look too wiggy?" Not at all.

Tim, one of our editorial directors, who checks on me daily and points me to the door if I've stayed too long, confirmed. Like it! Not wiggy.

Surely, there would be at least one response of "maybe just a little". Nope. Swanny, one of our sales reps, a fun hail-fellow-well-met kind of guy with a booming voice, stopped by. "Hey, I like your hair! Better than your real hair."

Ok, ok. Now to me, it still looked a tad wiggy. I mean whose hair puffs that high on the crown of their head. I wouldn't be surprised if I was pulled aside in the airport security line and grilled: Okay, lady, what are you hiding under that hair? An assault weapon? Plastique? A lotion tube larger than 3 oz.? Hmn, that last one might just work.

I have to say, come the afternoon, when the building heat rises anyway, I was boiling. My own body heat was all trapped under that thing that didn't look wiggy. I could feel the perspiration. Wow, is it hot in here or is it just me?

First thing I do when I walk through the door at home is whip off the muskrat, put it on its stand and stick my head in the freezer for a few minutes. It's a good practice anyway. If I ever forget to take it off and stand over a pan of boiling water, or open the door to a hot oven, it will melt. That's right, melt.

Are you getting the same image I got? Mrs. Doubtfire. Oooohhhh nooooo, boys and girls. I don't even want to guess what a melted wig looks like or how warm that would be on my head!