Wine & Flowers

Sounds like a great date, right? Well, not quite. But a good evening anyway. So good there really isn't a blog post. See, the flowers were sent by Barbara Ryan (Thanks!!) who I've know since I was a 17 year old away at college with her son Gary. Nice surprise! And then tonight was the very difficult and hard work of tasting more wines for Chris's website (ForgottenGrapes.com if you've forgotten!). Here's the tasting team hard at work. That's Chris of course, and Brein and Roryann Clements, and Roryann's mom Holly Gunnette. And then the super taster Seamus, picking out his favorite. Me? I sipped on a white wine and took pictures. But that's enough to make me too sleepy for a post tonight. So, I'll just remind you to read yesterday's post and chime in if you have any thoughts on the topics raised.

I'm sure I'll post tomorrow. After all, I head back to Quest for more blood tests and so begins the countdown to Chemo #3.

Maybe You Can Help

I mentioned that yesterday I had lots of energy (not quite the steroid-boost energy, but normal energy...which is rare enough these days) and one of the things I did was write an article for Area 9 magazine (for you locals--it used to be 951 magazine; and no, that's not Seamus on the cover...but it should have been!). The article is a first person account of my health care experience locally and why I left town for my care. Seems I had a lot to say--I'm having trouble with the 2,500 word limit. It got me thinking a lot about what's normal and what isn't in health care. And how much of a patient's care depends on where one lives or how far one is willing to drive. The city I live in has over 250,000 residents. It's not LA, but it's not a small town. I was truly surprised to learn, the proverbial hard way, that the standard of care here doesn't seem to be very high. Surprised, then pissed, and now just saddened, okay, but still a little pissed too.

This Thursday I go for chemo round 3. Thinking about how rough this last round was--from the reactions during chemo, to the hives and pretty much non-stop indigestion (how much baking soda and water can one drink??), I have to admit I'm more nervous about this next one than I was about the first one. And it strikes me as quite odd that I've only ever seen "my" oncologist once. Ever. We had an initial consultation (where she confirmed what Dr. Glaspy at UCLA had told me, dropped a few names, talked a million miles a minute and left). But all pre-treatment exams, treatments, follow-ups, shots and phone calls have been with nurses and the nurse practitioner. No doctor. Kinda feels like no one is really following or "in charge" of my case. I had heard that you don't really see the doctor--it's all the nurses who care for you in chemotherapy. Seems odd doesn't it? Something as serious and grotesque and potentially life-threatening as chemotherapy (not to mention that it's treatment for what could be a fatal disease) and the doctor is invisible? I don't know. I'm thinking that's not right. So last week I called the oncologists office and asked if I'd be seeing the doctor at my next visit. The answer was that I can if I'd like. Huh? Okay, I'd like. So that's noted in my file now, but she did tell me to be sure to remind them when I arrive. This makes me think the doctor is going to poke her head in and say "hi" in the middle of my pre-treatment exam with the nurse practitioner.

I'm gearing up to get some reassurance from my doctor. Which, again, doesn't seem right. But I have questions! Like, you know, "Doctor have you looked at my file? Are my reactions normal? Is there anything we can do about them? Were they side effects or allergies? If they're allergies, isn't it dangerous to give me that chemo again? And if it isn't allergies, then since the first chemo went just fine with just the extra dosage of steroids, why do I now have to do the extra dosage of steroids plus all the Benadryl, Claritin and other stuff?" Bascially, I think I want to scream "Help!" Or, more to the point, "Do you even care?" Chris said he's wondering if she'll remember his name. I had to laugh. I don't think she knows MY name.

So here's where I'm thinking perhaps some of you readers can help both with what I'm writing about in the article and just for my own peace of mind with what I'm experiencing. Or hey, maybe you'll inspire me to demand better care. Or to relax about it. I know that some of you have been on this breast cancer "journey" yourselves and some of you have been through it with close friends or family members. So maybe you'd be willing to share your observations of what was "normal." You can do so anonymously in the comments or email me (rhynetj at aol.com; Only you have to use the proper "at" symbol--I just did that so I don't get a ton of spam from automated systems) if your more comfortable with that.

Specifically, I'd be interested to know the following:

1) How long did you wait between the mammogram that showed something suspicous and the biopsy?
2) Did you feel like the time frame for treatment (start to finish) was reasonable? If not, why not?
3) Did you feel like someone was "in charge" of your care all the way through? If so, who was it? Your primary care doctor? the Oncologist? The surgeon? The Radiologist?
4) Did you see your oncologist regularly during chemo?
5) where do you live and where did you go for your care?
6) Where did you get most of your useful information? (Friends? Books? Primary Care physician? Surgeon? Oncologist? The web?)


I don't mean this to be a test. You aren't required to answer all of those questions. But if you'd be so kind as to share your experiences in regards to even one of these, I'd appreciate it.

On a closing note, in an exchange of emails this weekend with the good and great Dr. Karam (he from whom I still get all my information and medical support) he used the "journey" term without putting it in quotes (to highlight it's ridiculousness; he reads the blog, he should know better!). I, of course, took him to task (not too severely, don't you worry; it's all in jest), and he apologized saying he understood this was not like a trip to the Cotes du Rhone, it was more like Homer's Odyssey. And that's it! That is a much more apt description of this. It's my breast cancer odyssey! Doesn't that look like a white blood cell crash in that picture? And Chris is super excited about playing the role of Penelope. Seamus is less excited about being Telemachus, he prefers staying in bed.

Catching Up and Clarifying

I kinda figured I'd be getting a few comments about Thursday nights post. I just wasn't expecting the phone calls I got. So okay, first, I didn't have a bad childhood. I had an unusual one, but no better or worse than most. And my family is no stranger than yours (although it might be a little more, shall we say, extended). It's just the nature of families. And Valerie--of course I knew you were kidding and you aren't leaving me for those inspirational women. Please. With your attitude, they won't have you at their table either! As I said, there's a reason we're friends. And it's not for inspiration. It's got a lot more to do with the laughs. In fairness, I will share with the readers just how emotionally supportive I've been to Valerie (aka Louise to my Thelma...which will become clear in a moment). But let me be clear--she was a great support to me Monday night and has been through this whole cancer "journey."

Once upon a time, many years ago, Valerie and I ran away from home together, leaving the husbands behind (quite literally) and preparing for the imminent divorces. We shared a condo in Palm Springs. Not too much later we were cheering ourselves up over Cadillac margaritas at El Torito, when in walked Valerie's husband. With a date. My heartfelt and sympathetic words to her? "Well, um, if it feels like life is kicking you in the teeth right now, I'm just going to confirm for you that it is." That's all I had for her!! No "you're way prettier than she is" or "God has a plan" or "Quick, go stand by that super hot guy at the next table." No, nothing helpful or at all inspired. And she's still my friend! I think she even laughed. God I hope I bought the drinks. And I just realized my coping mechanisms haven't changed in 15 years. I'm still hanging out with sarcastic friends and sipping margaritas.

So those are my clarifications. Phew. When did everyone get so sensitive? Is it the cancer?

Now for some catching up. First, I feel great today. Great. As normal as I've felt I think since this whole thing started 3 months ago. I even slept solidly for 9 hours last night. 9 hours!! today I had enough energy to clean off my desk, write an article for Area 9 magazine, catch up on some emails and have a glass of wine with a friend and another one at dinner with Chris! And I haven't even had a nap.

Other things I pretend you care about: the cards have kept arriving (thanks Barbara Ryan! And Ricki, Trudi, Marcia, and Barbara Moore....and anyone I may have missed!). And Betty Rowe dropped off at my office the perfect gift during "hives" week-- a big bottle of Seasource Detox Spa Shower and Skincare gel!! I like it a lot and it seems to be soothing the skin quite nicely. I don't even think she could have known, the timing was so quick and perfect. And today Seamus unintentionally outed his little helper that previously dropped off the Cakebread Chardonnay. Seems the co-conspirator tried to sneak up today and drop off a bottle of Oregon Pinot Noir to congratulate Chris on his Blogbos award. But Seamus was alerted by something at the gate and set off the alarm (howl). Chris looked up from his desk and saw none other than ZEE BEARD at the gate!We invited her in and shared a glass. Of course, we also swore we'd pretend not to know and said she was welcome to drop off wine anytime. Anyone is, actually. It's the next best thing to appearing at my gate with a beagle.

Also, Wisconsin has checked in and shown the love. Thanks Pete and Heather Klug! In fact, the only states who haven't shown the blog love are: South Dakota (I broke my arm there; you'd think they'd care); Kansas, Oklahoma, Mississippi, Alabama, Delaware, Rhode Island and Maine. Not bad, huh? Oh, and 29 countries are now lit up on my beloved Google map. We've added South Korea, Austria, Croatia, Japan and Brazil.

And lastly, I washed my hair today. Pretty exciting for a bald chick, right? No, really, I washed the red wig. It seemed time. And yeah, it was a little weird to wash hair in the sink--while standing up straight. And it looks a little weird in the sink too. Drying it is a trick also. They give instructions on the wig shampoo bottle that get you right up to "rinse with cool water." Then I was stuck holding this mass of wet hair, wondering...squeeze? towel dry? comb? Hmmm.I opted to squeeze out the water, put the wig on its little metal holder thing (even I could figure out the styrofoam head was not an option for a wet wig) and use the wire brush ever so gently. Then I used bobby pins to hold back the sides in what I'm sure will be a futile effort to get it to dry so those stupid little hairs don't fall in my face. I'm sure I just created weird creases in the sides of my wig. I'm telling you, this was not a wimpy experience. Expect more scarves.

My Pink Irony

Turns out this breast cancer club is kind of a woman thing. Yeah, that's a problem. I have never been good at women's club things. Never. I may not be a "group" person in general. For example, the thought of a cancer support group, to me, is worse than the disease. And not surprisingly, no one (not even my health care providers) has suggested that I attend one. Okay, well, the oncologist's office did hand me a calendar of "events" at San Antonio Community hospital (which has an awful lot of support groups--but none for generally grumpy, sarcastic souls such as me) but the calendar was for January and February and she handed it to me on February 26th. Funny, they've never given me the March/April calendar. And I was so wondering what to do with all my spare time when I manage to stay awake in between chemo appointments, white blood cell crashes, blood tests, hives, 300lb limbs and practicing law in my year-old office. But that's what blogs are for.

So here I am--breast cancer person, thrust into a world of pink ribbons, cute t-shirts, inspirational talks/signs/ poems/books, woman power and....cliques. Yeah, cliques. Now don't get me wrong, I love the shirts. The favorite I've seen thus far was one that didn't apply to me--but if it did, you'd see me with the following emblazoned across my chest: "NO, They're Not Real. (the real ones tried to kill me)." But I'm not that big of a fan of pink (fuchsia, sure, but not baby pink), I think the whole "woman power/ be strong/ sisterhood" thing is cloying and annoying, and I couldn't possibly be inspiring to a single soul. I'm more of a warning to others (Kids, don't be like me). I also tend to find myself uninspired by things that I'm just sure are supposed to inspire me. I'm fairly certain, now halfway through this "journey," that at it's end, I will be epiphany-less. I will not be one of those people inspired to quit my job and pursue my passion. I will not suddenly decide to run or even walk marathons (I consider all these breast cancer walks to be invitations to hell; I thus decline. Please note there are no "Prostate Cancer 3 days of Group Pain" events with everyone in baby blue hugging each others sweaty selves; None.) I likely won't even begin to exercise regularly. I probably won't even be a kinder person and I'm highly unlikely to consider every day a gift (unless it involves wine. Or is a Saturday at home.) I want nothing more than to get through this and return to being me. Just like I was before. Sorry.

This feeling that I'm a member of a club has been around since early after my diagnosis. And hey, it's not a club anyone wants to belong to so that's no surprise. The feeling that I might be a loser member of the club and not living up to expectations is new-ish. But the fact that there are "cliques" within this club and a sort of "rule book" is only starting to sneak up on me. I'm not sure I'm finding my clique. Maybe because my people don't go to pink events? I might now be the equivalent of the goth kids in high school.

An example of what I mean. I went to the Inland Agency "Shop to Stop Breast Cancer" event last Monday. It's a fabulous event and it raises a lot of money to provide mammograms to women under 40 who wouldn't otherwise be able to get them. In just January and February alone they provided 120 mammograms and found 5 cancers! That's unfortunate and fabulous at the same time. So I wanted to support the cause (hey, I love shopping as much as the next woman, and I was feeling good that day). I bought my agency bucks and got my friend Valerie Zucker to go with me (that's us shopping in the photo; okay, that's her shopping and me being overwhelmed).

I wore the short blond wig with a head scarf (it keeps the fake hair out of my face) and I noticed two other women who were clearly fellow chemo gals. One wore just a cute newsboy cap and the other wore a bandanna. They both looked great. There were likely others there, choosing to wear wigs and thus not as easily identifiable as chemo folks. I definitely noted this and thought about how that really is such a personal choice--how one deals with the most obvious sign of this disease (or, the treatment anyway, since that's what causes the baldness). Look, I can laugh at my chemoenstein look, but that doesn't mean I don't want to look as good as I can look throughout this and especially in public (I'm not good with sympathy, so if I can avoid it--great!). That's what works for me and that's what helps me get through this. But there are "cliques" that form around this choice and there is, it seems, a sort of judgment among the groups. I've heard the "wigs are for wimps" on more than one occasion. And at that event someone told me how another breast cancer survivor had responded to being told that I had several wigs and chose to be blond one day, red the next, etc. with "yeah, well, wait 'til it gets warmer." Hey, thanks for the encouragement. Apparently if I don't just run around bald, I'm not part of the cool kids. Okay. I can live with that. I may or may not run around bald someday. But I don't think that makes me any more or any less of...well, anything. For the record, I generally prefer just a scarf (tied jauntily and fashionably, of course, in a way that resembles either a biker or a pirate, depending on the angle of the tie) and I usually wear just that out and about and at home. But at work? I don't know. Do my clients really need to be focused on my issues when they're paying me to focus on theirs? Do I need to have such a constant reminder of this "journey"? The answer is no. I'm a little unclear on why anyone else would want to make this choice for someone else or force a viewpoint. When we don't have cancer, is it permissible to comment on each others hairstyles of choice? Because if so....I've got a few things to say to some people!

Then came the inspirational speeches from the inspirational chair and the honorary chair (I'm unclear on the difference). I knew I was in trouble. First up was one of those women who actually is inspirational--you know, she's the one who runs the marathons, beat cancer twice, is happy, perky, thin. Shit. She belongs to the healthy athlete clique of pink. They do yoga, eat right, run, all that stuff and from the looks of things they have inner peace. I have breast cancer and Lay's potato chips. That's it.

Then came the other. She emphasized how she got through it by being aggressive in her treatment and with a strong family, strong friends and strong faith--at which point I turned to Valerie and said "I'm totally f**ked." Which worked out well since she had just turned to me and said "You're totally f**ked." (There's a reason we're friends). My friends have been great and I have more than I knew, and my family seems to be taking turns being normal, so there's that, but I have zero faith. Zero. So, yeah. Screwed. As the inspirational speech went on, Valerie told me she'd be leaving me to go hang out with these far more impressive women. I can hardly blame her. She was particularly impressed with the "I went to work everyday with a positive attitude" statement. Okay, I'm thinking the inspiration meant every day that she went to work, she was positive. Because, as far as I know, there aren't mobile chemo infusion facilities that come to your positive self at your workplace, so at least a few days of work had to be missed. But Valerie was adamant this woman was stronger, better, faster than me. (Valerie was kidding. I think.) But hell, I'm sure the inspiration is stronger, better, faster. I didn't go to work everyday with a positive attitude before all this, why would I be different now?? And, I kinda wanna scream, why do I have to be?? Oh wait, I don't. I'm not part of the we shall overcome inspirational pink clique either. Phew. Okay, no yoga, no marathons, no faith, no positive attitude. Still breast cancer. That's it. That's all I've got for you. (I was inspired to have a drink with Valerie in the Marriott martini lounge after the event. Does that count?) There are thousands of breast cancer survivors. Where's my clique? (For the record, I did not have this problem in high school; sarcastic un-inspirational girls with attitude were all the rage in high school, although hair style was extremely important then too.)

There are signs my people may be out there. There is Cancer Vixen of course (and to prove my point, at the event I was the lone purple Cancer Vixen t-shirt in a sea of pink Save the TaTas t-shirts; I probably overlooked a few Avon Walk t-shirts and the inevitable "Live Love Laugh" or "Mothers Daughters Sisters Friends" pink ribbon shirts). And I found a book called "Five Lessons I Didn't Learn From Breast Cancer (and One Big One I Did)" by Shelley Lewis. I think I'm gonna like her. A sampling: "If you honestly think breast cancer is a gift, you can't come to my birthday party." And: "I guess you could say my relationship with God has been problematic for both of us." She even talks about being in a separate chapter of "The Club." This could work. Next lunch time, I'm totally taking my tray over to her table to see if I can sit with her and Cancer Vixen. I hope they like my scarf.

Too Tired

I'm feeling okay. Don't worry. But I'm too tired to post. I'm going to go to bed early, maybe read a little and with any luck actually fall asleep and stay asleep. Like a normal person.

Remember to check out ForgottenGrapes.com Thursday!!! Virtual wine tasting here we come!

And the Blogbos Award Goes To....

The polls have closed. The votes have been tallied. The first annual (and probably only) BLOGBOS (Blog Break Out Star) award goes to (drumroll please....) .....CHRIS KERN!!!!! Cue the orchestra! A standing ovation! Hugs, kisses, tears! (Camera close-ups of the non-winners!?)

Could it have gone any differently? Well, yes. Rory and Restaurant Omakase ran quite a campaign. Seamus is still cursing his lack of opposable thumbs (makes the computer keyboard a little tricky for him). Dr. Karam remained dignified and continued his run as America's only non ego-centric surgeon by not running a campaign and in fact casting his own vote for Seamus. But in the end, it was Chris. It had to be Chris.

Because you are careful and sensitive readers and you too realize that it is Chris who has moment to moment, hour after hour, day by day been there for me through all of this, taking care of me, taking care of Seamus, making me meals, staying up at night with me, making me laugh, encouraging the little bit of exercise I do manage, making the phone calls to friends and family post-surgery/chemo/ and myriad other emergencies, picking up prescriptions, smoothies, weird food requests,and my spirits, battling health care receptionists, calling in reinforcements where needed, making sure I take all my medicines at all the right times, pretending I look not only normal but good, sitting through chemo and keeping not only me but everyone else in the "infusion room" in good spirits, and a million other things with grace and humor and unconditional, unwavering love and total devotion.

Some of you probably don't know this (and I like to think you can't tell) but Chris is a few years younger than I am (Ahem. Twelve.). So while I am a tad young to be going through breast cancer, Chris is astoundingly young to be the caretaker and significant other of a breast cancer patient. And yet he's been perfect. Absolutely perfect. And while I'm sure it hasn't been easy for him, I can honestly say he hasn't complained, hasn't snapped, hasn't said no to anything and hasn't even remotely let on that this is in any way a burden to him or even slightly tiring. He hasn't even lost his sense of humor (and believe me, I've lost mine a time or two). We probably have his parents to thank (they did raise him after all). And he had an example to follow--his mom had breast cancer 15 years ago and apparently his dad was quite the trooper then too. So thanks go to Jim and Trudi Kern. But mostly, my thanks, my love and my eternal gratitude and devotion...and of course the Blogbos, go to Chris.

And you can help me thank him too. Believe it or not, Chris actually has a life of his own and has managed to keep that going through this all too. Besides being the primary organizer and President of our Words & Wine tours, he writes a wine column for Area 9 (formerly 951) magazine. And this Thursday, April 2, 2009 he'll be launching a wine website and blog of his own. The site is Friends of the Forgotten Grapes Please check it out! You'll learn a lot. It's funny, entertaining and very informative. If you enjoy wine at all, you'll enjoy this site--whether you know a little or a lot about wine. It's an irreverent look (hey, it's Chris writing--that shouldn't be a surprise) at some of the lesser known grape varietals--something beyond your cabernets and chardonnays. A great way to expand your wine horizons. He'll feature a different varietal every Thursday. And yes, there are that many of them. The wine tastings have already been underway in our house (remember the one I was pretty useless at a week or so ago?).

Chris's website launch was even mentioned in the current edition of Area 9 magazine--and so was my blog!! (What? You thought I'd get through this whole post without making it about me??). The site will also include some tips on pairing foods with the wines mentioned--the food tips are from none other than Chef Brein of Restaurant Omakase. (They were gracious in their blog defeat.) So, it's off to a great start, but Chris needs your support.

Please join us in a virtual wine tasting party Thursday April 2, 2009 to celebrate the launch. The details are on the site. Which, again, is www.forgottengrapes.com ! Basically, it involves pouring yourself a glass of wine (hey, pick up a bottle of something you haven't tried before...that's the spirit!) and sipping it while perusing the Forgotten Grapes site and maybe sending in a comment or two--on the site or the wine you're drinking or something you'd like to know more about. Who knows, maybe you can become the next Blogbos award winner!

Looks Like We Made It (knock on wood)

Cue Barry Manilow...
Day 12 post chemo #2...no white blood cell crash. Or red for that matter. In fact, I feel pretty good. I am hopeful that the worst of chemo round 2 has passed and I will get to be a fairly normal person (oh, shut up) at least until chemo round 3 (April 9--yep, right before Easter).

I spent Sunday trying to stay in my happy place--they say it's all about the attitude (and believe me, "they" say this a lot. I hear it all the time. I'm not sure if that's because people think my attitude sucks or is good. I just know it's all in the attitude). I found three separate "happy" places were involved. I felt well enough Sunday to go into work. I'm not really a workaholic. But I like my job. I like my clients. I love my office. And it felt good to get in and get a few solid hours of productivity in (it's also good in the "oh good I might not starve and I might be able to pay the office rent and my mortgage" sort of way). So I was happy. For a few hours. Then I started feeling not so hot. Back home I went. And back to bed. Which is where the second happy place was found.

No, no, not like that. I spent couple of hours napping and reading in bed. I decided to go with a little more serious reading but also sticking to the fantasy/fun theme. I'm reading "A Day in Tuscany" by Dario Castagno-- an English speaking Italian who gives tours in the Chianti region. I spent more than a few moments daydreaming of past and future (just not this year) Words & Wine trips to France. The common denominator is wine, in case you are wondering. But also, just the joy of travel (the photos are from our 2007 trip; and those are our friends Rich Gold and Gary Berg), which is definitely a happy place for me. It just so happened Rachel (our friend and partner in France) posted to her blog about spring in Provence starting to arrive--so you should check that out. This Provencal Life. You can find a temporary happy place there too.

And then, happy place number 3 came to our house. Walked right up to our gate. Our friends and neighbors Dave Wright and Vince Price stopped by with their new family member....a beagle!!! They adopted a beagle (prior name Snoopy; may be named Rusty now...it's a work in progress)!!! That's him over to the right--he's a good looking dog. Seamus loved him! And Seamus hardly ever cares about other dogs (except Michelle Ouellette's dog Will. Seamus heart Will. Totally.) Seeing two beagles run around playing and knowing another beagle was rescued and found a good home--that's a happy, happy place for me to be. So we had a mini "Beaglefest." And Chris did point out that we were at Beaglefest on Day 11 after chemo round 1 as well. Things went well today though--so we can't blame the beagles for the crash. That's my scientific test and I'm sticking to it. Beagles = happy place and all good things.

I did have a killer sore throat by the nighttime and had to resort to Nyquil for that and the cough that was creeping up. That meant I slept well. By this morning, I was good enough to go to work. And by coming home for lunch, steroids and a nap, I was good enough to go back to work and then make it to the Inland Agency's "Shop to Stop Breast Cancer" at the Marriott with Valerie Zucker and a few hundred other folks, mostly wearing pink. I opted to be subtle in my purple "Cancer Vixen: No Breast Left Behind" T-shirt and black and purple and several other bright colors head scarf. More on that event tomorrow. I've got to pace myself, you know.

Chemoenstein

The hives covered my hands. Need I say more about why there was no post last night? Seriously. Hand hives. Who does that happen to?? Me. Of course.

Allow me to describe my Friday night post-posting to you. I played a fun little game we'll call Misery Slots. See, I had three things going wrong intermittently all through the night, any one of which was enough to keep me wide awake. First, of course was the hives--which periodically would flare up and make me want to tear at my skin. Then there was the hot flashes--see, among other charming things about chemo is that it sends you (well, me, in this case) into early menopause--which may or may not last. So hot flashes, night sweats, all those lovely things, are common. And then there was the indigestion--which is what I suppose is the common name for the elephant stepping on the middle of my chest. Every so often it would feel like a tennis ball got lodged in my esophagus, and all I needed to do was swallow it. Right. Because that's comfortable. So sometimes one of these things would occur. Sometimes two, and if I hit the misery jackpot, all three were up together and the bells would ring, the siren would go off, and ....there was no jackpot payoff. Except total misery. Did I mention I didn't sleep? Well, I did...the first two hours after Benadryl, but then I was wide awake and thrashing about.

The steroids take sometime to take effect, so it was hydrocortisone cream, Calamine lotion (seriously, when was the last time you had to use Calamine lotion? I was desperate) and Benadryl as often as possible. Finally morning came. Steroid dosage!!! I started to feel a little better around noon on Saturday. Which is also when my dad called. My dad is a chiropractor--with a lot of medical background and always has really good medical advice. I just sometimes forget to call and ask (I'm not all that good at asking for help, it turns out.). But he had the perfect, simplest, quickest solution to the indigestion (and honestly, the indigestion was killer--I probably would have made it through the other two if I could've gotten rid of that sooner). So here's the magic solution: two teaspoons of baking soda in a glass of water. Honestly. It worked like a charm. Way better than Zantac!! It doesn't taste so hot, and sure, in a matter of minutes I was burping like an entire beer hall filled with truckers, but that was music to my ears (Chris may disagree, but he probably preferred it to the groaning. I haven't asked). Gone, resolved, over, elephant off the chest within the hour!! After dinner it started up again, and I drank more baking soda water and nipped it in the bud almost immediately. Amazing. Who knew?? Well, dad did. Father knows best. Must remember this.

So Saturday was a day of recovery, once again. I slept. I read. Hey, I finished Dogs & Goddesses--and for a quick, fun, easy read, I highly recommend it. Funny, entertaining, no deep-thinking required, dogs don't die (they talk instead), kind of paperback fun. I tried not to scratch, and I took steroids 4 times throughout the day. Then I took an oatmeal bath to try to reduce those red welts on my body. That was really good in one way--it was soothing. And really bad in another--there's a mirror in the bathroom.

I stepped out of the tub and came face to face with Chemoenstein in the mirror. There she was: bald, grey bags under her eyes (no sleep), red welts all over her body (made much more vibrant by the warm water), red scratches streaked across various spots, a two inch scar across the right breast (another under the right arm, but I wasn't stupid enough to lift that arm and "enhance" the view; I just knew it was there), and a nice steroid bloat already started. Pretty. But I must have been feeling better, because I laughed. No other choice. It was appalling. What the hell else could happen?? I have hives on my hands--no, really, the palms of my hands!! The next time you think you are having a bad day, or a bad hair day, or you don't look good, or you are annoyed at the extra 5 lbs you've put on--I offer you that image. If you can still be down on yourself and not say "oh hell, at least I'm not Chemoenstein"-- you need professional help. Or just call me and I will come over and slap the silliness out of you.

The rest of the evening was spent with fresh-baked chocolate chip cookies and milk, cuddling on the couch with Chris and Seamus (neither seemed to notice my monster like qualities) watching movies. And trying not to scratch.

(The cute little monster in the photo was a gift from NANCY MOURGUET--something to pound on bad chemo days. I think it's too cute to pound. And it's way, way cuter than I was last night. )

Red Blood Cells need Love Too.

I have no luck. None whatsoever. Just when I started feeling better...Wham.

If you read yesterdays post you may recall that I mentioned my head was really itchy. Yeah, um, it's not alone. When I woke up I noticed a few red blotches on my wrist and arm. Then I got out of the shower and eeeh gads!! I had what can only be described as welts in patches all over my body (although Chris suggests "hives")--and yes, on my head too. I went to the handy-dandy "pages stapled together" booklet that passes for my guide to chemo care and became concerned that I had several of the side effects that may indicate a red blood cell count problem or a platelet problem. Either one is of course, not good. So I called the oncologists office...and right, it wasn't 9a.m. yet so no people are available. I self-medicated with hydro cortisone cream, which helped keep me from scratching all the skin off my body until 9a.m when I got a hold of a nurse (doctor must have moved to Switzerland and the nurse practitioner was in the Pasadena office). The nurse had me take two Benadryls and go to bed. First of course I had to call my office and have them cancel my appointments for today. Then I did as instructed and yeah, no kidding about going to bed. The two Benadryls knocked me out. On the bright side, I don't think I've slept that well in a long, long time.

When I woke the spots were somewhat smaller and not neon angry red. They were a nice breast cancer ribbon pink. But definitely still there. Nurse called back, asked questions, suggested another round of Benadryl. Rinse, Repeat (more good sleep). By the next call the nurse practitioner had been contacted and they were calling in a steroid prescreption, since it appears I'm having an allergic reaction to something or other--apparently it's not a red blood cell or platelet problem, although I'm not convinced they know for sure. So, yey, hooray, more steroids for me. Ugh. 6 days worth--start with 6 a day, drop to 5, then 4, and so on. And of course, much like chemo day itself, I have indigestion too. The really fun part is that it's the weekend now, so if anything else occurs I'll be dealing with Urgent Care (at UCLA!!). And I missed a day of work. This was just not in my plan! Cancer's little buddy chemo is so rude. Completely inconsiderate. Just leaves me quite literally, scratching my head.

Chemo--the Gift that Keeps Giving

I can't decide if I'm like a really old person or a baby. I pretty much want to sleep and eat all day--although it turns out I'm pretty fussy about what I can eat. And I wake up several times a night. Generally between 4 and 5:30 a.m., I'm just tossing and turning (and getting up to get Tylenol). So which does that describe? Great grandma? newborn? Or, chemo patient? Why would those things have anything in common? Discuss amongst yourselves.

I think toward the end of this fun chemo thing I'm going to have to catalog for you all (fair warning) the side effects they say are common, less common, and rare--and then list the ones I had. There's no point in doing it now, because I get new fun little side effects all the time. Today, my hips were hurting. And if I move just wrong, I get a severe lower back shooting pain. Stop, drop, pop-off shooting pain. I suppose this is the Neulasta joint/bone pain (they say it affects the large bones and um, my hips certainly qualify). And my head is itching like crazy--I'm guessing the fuzzy bits of hair are now wanting to abandon the cranium as well. It's amazing the numerous ways your body can be affected by poison. Or, well, maybe that's not so amazing.

For your sake and mine, I do not want to focus on the craziness. There was a lighter side today. I worked from home. Chris and Laureen handled the office, so I could stay home. Which worked out really well. I got plenty of work done, but could easily take a nap as needed. And 2 naps were needed, but that allowed me to put in a full day of work. Work is great for keeping my mind off "things." But it also meant there was no real reason for me to wear make-up or gussy myself up in any way. So I spent more time than I have before bare-faced and bald. And pretty much sloppy in yoga pants and a t-shirt (Save the Tatas!). I didn't feel bad. It was kinda freeing. Not surprisingly, this does cause one to examine ones face and skull--especially since I've never seen the skull quite like this. I wasn't horrified. This is good news.

I do have two scars on my head that are more visible than before--they are at what used to be my hairline and is now a tan line (face is several shades more beige than the top of my head, as it turns out, not at all surprisingly). One is from falling down my grandparents back door stairs as a kid, and one is from where my older sister stabbed me in the head with a fork (ah, sweet childhood memories). But all in all my skull is in pretty good shape. It's not oddly shaped and doesn't have too many bumps or protrusions. This is chemo's gift to me. I know what my skull looks like--most of you don't.

And of course the face becomes more noticeable without hair. I've heard several times that I'm lucky because I have a "pretty" face and thus will look fine bald or can "pull off" just the scarf look. This cracks me up. It reminds me of when I was first diagnosed and people would say "You are a really strong person. You'll do fine." It's nice and all, but both are statements with zero credibility. Because really, you can't say anything else. If a person isn't strong or doesn't have a pretty face, what are you going to say? "Wow. You are never going to be able to handle this. You'll fall apart. And oh good lord, with that nose of yours you'll look horrific. Best of luck!" No, no you are not. You are going to say "You'll do great. You're a strong person. And you have such a pretty face." You're going to lie! But thank you anyway.

Today, examining my new look with no make-up, I came to the conclusion that I'm lucky my face is just sort of plain. So nothing really stands out--which is good now. And really, I mean that in a good way. I don't have any outstanding features (okay, I'm 5'10", and that's hard to miss, but other than that) one way or another--no particularly great facial feature (or hair when I had it) but no particularly bad one either. Most people have one or the other or several. I don't think I do (feel free to point out what I'm overlooking. I'm totally kidding. Don't say anything.) To test my theory, those of you who know me, quick...what color are my eyes? .....waiting.....waiting......Right. See? They're blue. But not the sparkling, baby blues of literature and song (and Chris). They're a really dark, oceanic blue. Almost non-descript. But they're a normal size and situated normally in my face. So basically, they're just eyes. Plain and simple. My mouth is kinda small, but my teeth are gigantic, so that averages out to a normal smile/mouth. Nose is just a nose. Chin could be stronger, but the cheekbones aren't bad, so hey, once again, bone structure is average. I'm telling you, this makes "no hair" a bit easier--I don't need it to compensate for anything in particular (except, you know, my bald head). I had time to analyze this today (ironically on the day after excoriating the hapless author who had his character analzye himslef in a window reflection). No reason, it's just really--how often am I going to see myself bald and clean-faced like that? (The answer is, well, several more months, but I'm sure I'll get over this very soon. Like now.)

There were other chemo gifts today too. I got another card in the mail (thanks Christine) and Eliza and the staff at ADV sent the beautiful flowers in the picture. That was a very nice surprise. I like that it was just to remind me they were thinking of me. Very kind. And TERA HARDEN, criminal defense attorney supreme, is going to get my jury duty summons kicked to...well...as far as we can get it kicked! Thanks Tera! And Chris brought me home the highly recommended Strawberry Banana smoothie from Jack in the Box-- Thanks for that tip TC BOND!! Works perfectly for "chemo mouth."

I also got a little love from Luxembourg. Someone checked the blog. That brings total countries to 24! To wit: US, Canada, France, Germany, Australia, Belgium, Indonesia, South Africa, India, Finland, Switzerland, New Zealand, Pakistan, Serbia, Poland, Japan, Sweden, Czech Republic, Lebanon, Ireland, Russia, Luxembourg and Hungary. Crazy isn't that? Great job spreading the word!! Anyone know anyone in Uzbekistan?

Of course, Wisconsin still hates me. Don't know why. I love their cheese. But Wisconsin, Wyoming, South Dakota, Kansas, Oklahoma, Mississippi, Alabama, Indiana, Delaware, Rhode Island, Vermont, New Hampshire, Maine and Alaska have all been too busy (shoveling snow and dealing with tornado warnings?) to check the blog. We're working on them though.

So yes, chemo is the gift that keeps on giving. Even if I'm making up some of the fun myself (Google analytics is endlessly amusing). But you'll be happy to know we have no big plans for this weekend. We are thinking we'll have a nice relaxing weekend...in anticipation of Day 12 on Monday. Will she crash or won't she?? I'm thinking postively. I'm registered for the Shop to Stop Breast Cancer at the Marriott Monday night. And my Cancer Vixen t-shirt arrived just in time.