Thursday, January 31, 2013

Everyone Needs a Little Pep Talk!

I was sent a link to this video by a friend who is taking this cancer journey with me. She knows that there are days when we just need a little motivation to get through the day. 

I think this video is perfect...and hilarious...and it references my favorite poem, so what could be better?!

Wednesday, January 30, 2013

First 4 Rounds of Chemo: OVER!

I have had 4 doses of A/C chemo over the last eight weeks, and to be honest, there are times when I felt like it was trying to kill me. Or I wanted to kill someone else. But now that I am coming out of my self-induced, sitting in the dark, curled up in a ball, I hate everyone "chemo weekend," I realize that I should be celebrating this momentous event!

Holy crap, I survived the chemo designed to bring me to my knees! And it's OVER!

True, I still have 12 rounds of chemo coming, EVERY WEEK, and it will bring with it a whole new set of side-effects and challenges (rumors abound that I get to look forward to my fingernails falling out), but everyone has said that if I survive the A/C doses, then these next several months will seem better. Or much more bearable. 

Fingers crossed!

Monday, January 28, 2013

No More Paperwork? What a Novel Concept!

While I'm hiding in my dark corner of the world, I've set this interesting article to post. A friend sent me this link to an article on CNN about how a hospital/cancer center figured out that they get better results and less patient grief by collecting and keeping information on the...COMPUTER. What a novel concept?!

I also heard from a friend that her husband's company works with doctors to set something like this up. So, somebody needs to start hounding my doctors to get this up and running now!

Saturday, January 26, 2013

Chemo, Round 4...Yeah, I'm Over It

Friday was my 4th round of chemo. For those of you actually keeping track, it should have been on Thursday, but I swapped days to buy myself some time see my daughter's theatrical debut in the school play. I was required to wear the Katy Perry wig because said daughter has started calling me "Patchy." "No really mom, I love you, and I think you look great, but you are kind of patchy." Fine, hint taken. But it was nice to be out and she really did rock the stage as quite the sassy milkmaid (Aesop's Fables).

First off, I am so over this whole cancer/chemo/sick person thing. SO. OVER. IT. You wake up on chemo days knowing exactly what you are in for in about 48 hours, and yet you still have to do it. It sucks! Enough said.

The highlight of my day is always the visit from my favorite pharmacist gal. I love how she pops in and says "hi" and sits and chats about whatever (including the craziness of the day or some of the things listed below). Or the crazy teenage boy...or the daughter's school play...doesn't matter. She always takes the time to chat. And if she does this with everyone, and remembers all the details for all of us, then she is pretty amazing! Today's joke was that my gorgeous view outside, which could have been the remarkably sunny, blue skies, was actually the beautiful cement wall surrounding the hospital. 

But I did learn some things today that would have been nice to know before now:

(1) See the last post regarding my complete loss of taste buds and how I probably could have prevented this with a few easy steps. Grrr.

(2) The squeaky wheel gets the grease! Every time we go, the process tends to take HOURS longer than it is supposed to. And I am always so nice. "Don't worry, I'm enjoying my book, whenever you get to it." Yep, I'm probably done being that patient. Friday we came a little early, because I wanted to be home in time to do the actress' hair and makeup before the show. All I had to do was say this to a sympathetic doctor and surprise! Blood draws were moved up, labs were rushed, and an empty chair was magically found. I was out the door earlier than normal, and even got home before school got out. (I wasn't expecting to be home until 5pm).

(3) I finally saw some lab results from a blood draw. Good news: my white blood cell count is off the charts..."amazing" was the word they used. Well, not amazing for you, but amazing for a cancer patient who's being poisoned. In fact, this round of Neulasta shot should be my last. HALLELUJAH! And these high numbers are probably why I've been feeling so much bone pain. Too many white blood cells and no where for them to go. Bad news: red blood cell count not great. Not bad yet, but close. Was compared to a gas tank...25 would be empty 45+ would be 1/2 full. My number is 31. This above all else explains why I'm so exhausted. Why I have to sit down halfway through a shower. Why walking 4 blocks in the neighborhood wipes me out for days. Unfortunately, I have to get this number back up and the only way to do so is to exercise. Damn, just when I was getting used to being a sloth. That couch has a comfortable cushion nicely shaped to my butt.

(4) The weight gain has been explained. Okay, besides being a sloth (see above), I did not realize that they were also shooting me up with steroids at these chemo infusions. (Seriously people, send me a detailed email with all this information. No one, especially someone suffering from chemo brain, should realistically be expected to retain these details). My favorite pharmacy gal laughed at me when I was complaining about gaining 4-5 pounds through this process. It happens to everyone (that doesn't get violently ill). And it won't go away until chemo is done. I am done blaming my lazy ass for this weight gain...It's the steroids! (At least, that's the story I'm selling).

(5) Just when you think paperwork can't get more stupid...HA! So now, you have to fill out a form every time you go in (name, birth date, etc.) and check the boxes that correspond to new symptoms that you are feeling. But if you aren't feeling any new ailments? You still have to fill out the form and write, "no new symptoms." Holy crap! And I now have to SPELL my first, middle, and last name, as well has give my birth date EVERY TIME someone speaks to me. And the trifecta? You now have to wear a sticker around that proves you've been "screened" for cold and flu. The sticker, which is just printed on a laser printer label that can be found at any paper supply store, says, "It's Friday and I've been screened for cold and flu." There's a new one for every day of the week. And if you aren't wearing it somewhere visible, they won't let you back (patient, family, visitor, staff member...everyone gets to play). What's funny about this? Want to know what the screening process is? "Are you experiencing any cold or flu symptoms today?" Answer "no" and you get a sticker. Or print them up yourself at home, I guess. Now, as annoying as this new feature is, I feel most sorry for all the staff that have to wear these EVERY DAY while at work. No thank you. 

So this is my most recent fun. I'll try and post pictures of the play. Did not get a picture with the milkmaid while she was in costume...bummer. 

Off to curl up in a dark room for the next few days and hope no one comes to bother me. Especially if they smell!

Friday, January 25, 2013

Taste Buds...Who Needs Them?!

So, a couple of weeks ago I posted about my general complaints...not the obvious "I hate everything and everyone 2-5 days after chemo" complaints, but the day to day irritations about this entire process. 

One of those annoyances was that my taste buds were all out of whack. Nothing tasted like it should, and this is really irritating! I have to say that going through chemo is a little  like being pregnant (only much worse in my case): you crave certain foods, smells really bother you, and only one particular thing sounds good to eat at any given time. I was not above making the husband run to McDonalds for a milkshake at 9 in the morning. And it better be vanilla, because if you bring home the wrong flavor, watch out!

The reason it sucks for your taste buds to be out of whack is that you crave something, like an amazing plate of pasta, and you make someone make it, and then you take a bite and go, "sorry, it doesn't taste right, I can't eat it." FRUSTRATING for everyone involved, I promise! But as annoying as this was becoming (and I'm pretty sure there were days that the husband wanted to kill me), I was starting to acclimate to this change. I had started finding the things that did taste good to me and satisfied the cravings. It was annoying, but I was coping.

And then I clearly made the mistake of complaining about this side effect to some people. The chemo gods obviously thought they'd have a little fun because the next morning I woke up and couldn't taste ANYTHING! And I knew it immediately because I had a sore throat, popped in one of those nasty cherry tasting lozenges, and realized I couldn't taste it...AT ALL. UGH! Throughout the day I tried everything to no avail. Nothing had any taste.

It's been a week now, and I still can't taste anything, so I've given up hope that this is temporary.  And I promise you, compromised taste buds were WAY better than no taste buds. I take back every bad thing I said about them being whack...because I never realized that I should be grateful for messed up versus nonexistent.

I can't even describe to you what it's like to eat things without tasting them, but it certainly has taken a lot of normally tasty items off the menu: rice, pasta, fish, meat...anything soft is just disgusting when it doesn't have any flavor. I'll save you the vivid imagery of what's its like to eat these things.

What I have discovered is that I eat for texture now. If it doesn't crunch, I don't want it. I've been living on broccoli salad (the kind with cashews, cranberries, bacon, and what I'm sure is a tasty onion dressing), pomegranate seeds tossed on EVERYTHING, and cinnamon chex (for some reason, I can actually taste cinnamon on a small corner of my tongue). Also, if something is crazy spicy or has a strong smell (bleu cheese), my sense of smell is clearly compensating. I can't really taste it, but my senses must be creating a taste on some level. We went to Chinese food for my mom's birthday and the only thing that tasted okay were the spicy green beans. They cleared my sinuses and though I couldn't taste the spice, they did taste and crunch like a green bean.

I'm typing this while sitting through my most recent round of chemo. And I'm a little grumpy because I have just learned that I could probably have salvaged my tastebuds by rinsing with salt water and baking soda 6 times a day from the beginning. The doctor was surprised I hadn't been doing this. Well, if someone mentioned it, or stressed how important it was, I didn't hear it. I only heard the baking soda part for mouth sores. Trust me, this is something that I would've been doing!! (She does think I might be able to rescue them if I start this now, which I will be doing as soon as I get home).

Be careful what you wish for is the motto for the day I guess. I never thought wishing for tastebuds that weren't out of whack would bring this on. And let me tell you, if it's too late to rescue them, I'm going to be like this for the next 3-4 MONTHS! Dear lord, I now know where homicidal rage comes from...
Most. Annoying. Symptom. EVER!

Tuesday, January 15, 2013

Another Day for Music

It's icy, cold, and snowing (sort of) here. I've just come out of my weekend battling the chemo truck. My head is COLD. And I miss my adopted home (Hawaii). 

This is a song that I listen to a lot, and something I really needed to hear again today. All can be right with the world, at least for a little while...

Sunday, January 13, 2013

So Really, How Do You Feel?

"How are you feeling?" This is a question that I get asked a lot. And before you think I'm complaining about your concern, I'm totally not! I so appreciate all the love and good wishes and support and thoughts. But sometimes I wonder if you really want to know all the details...probably not. But I thought I'd do a post about the most annoying complaints I have.

When I'm not being hit by a truck (that is, the 3-4 days after chemo, which is a post all on it's own), I generally feel:

(1) TIRED, TIRED, and TIRED some more. It's kind of embarrassing. Did you see the Parenthood episode a couple of weeks ago where Kristina makes a comment about hitting the wall? How 6 minutes ago she was great and now all she wants to do is sleep? I laughed because that's exactly how it is!

(2) My teeth still hurt, but changing toothpastes and avoiding cold things is helping. And my favorite pharmacist asked her dentist dad about it, and he says he has had patients going through chemo complain about it and they think it might be related to not getting enough fluids. So even though I feel like I'm drowning in cranberry juice and green tea some days, I'm going to start drinking more and see if it helps.

(3) A new malady that's come up in the past week is my eyesight. I can no longer see things up close. Reading books, recipes, email on my phone...all a problem now. I'm going to have to go pick up some of those cool granny glasses. Luckily, the doc says that this, too, is a side effect of chemo, and tends to sort itself back out again within several months of the end of treatments. It better, because reading is my life and I'm starting to feel old.

(4) My head is always cold now! And if I go outside, it gets rained on which makes it colder! Yes, I know, I should just wear the wigs, but eventually they make you hot and itchy, so you don't really wear them around the house. Thank goodness for the hats that people have made and sent.

(5) This might seem petty, and I already know better than to complain about it to the doctor who would be excited to hear it, but I am GAINING weight. WTH? And I know that none of you would think this is a bad thing either, but still. This is most notable because in addition to asking your birthdate every time you walk in the door, they also weigh you. And they think they're being sneaky by having the electronic scale post it in kilograms, but science major me knows how to do this math. And I've gained 4 pounds in less than 3 weeks.  (Yeah, yeah, yeah, I'm sure it has nothing to do with all the sitting on my ass I've done since mid-December, but when there's only about 4 days out of every 2 weeks where you actually feel good enough to walk around the neighborhood, sitting sounds pretty good).

(6) Chemo brain is setting in. I knew it was coming, but I hate it. Chemo brain is this strange phenomenon where you lose your short term memory, forget the words for things that you know, etc. There have been many times where I pick up the computer and then forget why I did. Or I'll be in the middle of typing these posts and forget what I wanted to say. Or I'll be talking to someone and I won't remember the word I'm looking for. This usually involves me waving my arms around frantically as if that will help my brain come up with the right word/name. MAKING ME NUTS!

(7) If there can be a most annoying malady, it's definitely that my taste buds are WHACK right now. Things that I used to love to eat no longer sound good. One example of these is my complete lack of desire for my mochas/hot cocoa. I've gone back to tea, and even green tea which in all honesty I used to hate. I can't get enough of those hideous bottled Lipton green tea and berry concoctions now. My favorite shrimp tempura? A definite no go right now. Nothing tastes right, or how you remember it, or how you expect it to taste. There's been many a night where I'm the person having something else for dinner because what was on the menu just doesn't taste right to me. Crazy!

(8) And a last complaint...if the fast-growing hair cells are being attacked making me bald, can someone explain why I still have hair on my legs? I'd be happy for that to go away ANYTIME! And I promise you that it's much faster growing than the hair on my head, so what's the hold up??? I'd be happy not to have to shave my legs. I mean, really, there's got to be one perk to this whole process, right?

Saturday, January 12, 2013

Bald is Beautiful...But Wigs Are Fun!

So, I've set this to post while I'm being run over by what I hope isn't that big of a truck this weekend. But since I'll be down for the count, I thought I would post something fun instead: WIGS!

I have been touting the purchase of my Katy Perry wig since Thanksgiving, but I have been waiting for a special occasion to show it off. Well, the hair is officially gone, so now is the time. Here are the three wigs that I have found so far:

Me as Katy Perry: The girl child is desperate for this one, and has in fact stolen it already for a "wacky tacky" dance at school this weekend. Regardless of what anyone else thinks, this is my favorite. Contemplating wearing it for next year's school yearbook photo...hmmmm...

My Merida wig, only in a slightly different shade. It still needs a bang trim, but at least you get the idea of the color and curls.

And here's the "normal" hair that will satisfy the teen boy who's scared to be seen with his mother dressed up as a rock star that's probably two decades younger than me in real life. I got this one mainly for it's cool color (called caramel by the daughter who is becoming my stylist), and the fact that I can wear it up and in ponytails.

Still holding out hope for an emerald green wig...stay tuned!

Friday, January 11, 2013

Chemo, Round 3

Yesterday's latest round of chemo can best be described as a clusterf*@%. And though I was thinking this all morning, it was actually one of the staff members that used the term out loud first, so at least I wasn't the only one that felt this way.

First, I did set myself up for a minor delay by showing up 15 minutes late. I woke up early, got the kids up and out, and then had time to go back to sleep for about 45 minutes. When I woke up the second time I felt BAD. I had a headache and felt a little queasy, and was contemplating not going. There's two schools of thought here: you're feeling like crap anyway, so why not go get poisoned; or I already feel bad, I'd prefer not to feel worse. We called to the doc to ask what would happen by delaying treatment a day, but didn't get a call back right away. And since I figured she'd still make me come in to at least get checked out, I decided to go for it. But I wanted it noted that even though I wasn't running a fever and my lab work looked fine, I felt like crap the whole time.

So, the appointment was for 10am, (we got there at 10:15am) and the place was SLAMMED! Crazy busy like I've never seen before. Questions rolling through my mind: did all these people just get diagnosed? Did they all switch treatment days? What the heck is going on? And, don't get me wrong because I really do love the senior set, but EVERYONE here today is four DECADES older than I least. And why aren't any of them losing their hair? Hmmm...

There's no room in the inn so to speak, so at 10:45am I get shoved in a chair in the corner, literally. They weigh me and take my blood pressure, and then I have to SIT until a room opens up. I send Keith to get me lunch now, because it's going to be awhile with nothing to do but stare at each other. The doctor comes to visit (which she always does before I get drugged up), but can't really do much because my labs aren't back yet. This would be because they haven't even taken my blood yet. Yep, it's gonna be a long day...again...

I finally get my own room at 11:45am and the process finally starts. I don't end up getting home until around 3:45pm. Fun day! I did learn that there were a few reasons for the overcrowding today. (1) The weather was cold and icy, so several people were concerned and showed up EARLY and they let them go. (2) The people that schedule the appointments ask you what time you'd like...and then they give it to you...even if there aren't enough spots to serve everyone that wants the 10am appointment. Call me crazy, but that'd be like giving all the teachers in my school 6th period planning because they asked for it. Sounds fun, but doesn't really work out that well.

Tuesday, January 8, 2013

The Evolution of Hair

Last night was buzz cut night in the Yusko household. I think the key was when the hair was falling into the fettuccine while I was cooking. Time to get rid of the little that was left. Well, sort of. While Keith stepped up to the challenge and razored his right off (matching my dad, who beat us all to the punch and did it this past weekend), I simply buzzed mine super short. To me, the razor is just a little too scary on my poor defenseless scalp. As you can see below though, I've got enough bald spots to qualify. I'm just going to let the rest fall out as it will this week.

Before I start posting pictures of me in the crazy wigs, I thought I would post some pictures I'm calling "The Evolution of Hair" least, my hair:
(1) When it was long and curly (I blame the kids for this curl, by the way. It was never this curly until after I had kids...grrr. I should also blame them for the gray hair, too...which you won't see in any of these pictures thanks to the wonders of haircolor). Never as long or as beautiful as I wanted it though.

(2) In April of this year, I went short. Now, somewhere in between these two, I had it longer and straight, but I can't seem to find any picture where I wasn't wearing it up in a clip. 

(3) After Thanksgiving, I chopped it short so that I wouldn't have to deal with clumps of longer hair falling out.

(4) New Year's Eve, what I lovingly refer to as the "Les Mis Look." Or a refugee..

(5) January 7, 2013: The cancer patient buzz...or GI Jane, as we like to call it. Let me just say that IT'S COLD AND WET outside, and WOW! does this hair style (if you can call it that) make your head feel it!

Thursday, January 3, 2013

In Which I Feel Like a Cancer Patient...and Look Like a Refugee

Today was a return trip to the doctor's for blood draws and lab work. Fun times, I promise. It means another poke or two with a sharp stick (okay, it's a needle), a 30-45 minute wait while they process the results, and at least three different people asking me my birth date. Yep, it's definitely fun not to be missed. But everything comes back "fine," which is code for "not good but you're not going to die" so I'm free to go home.

Today, we are headed to look for more wigs, and then to Target to get my next round of meds and do some shopping. It's just a party a minute when you're hanging out with me these days!

Wig shopping was pretty hilarious. We end up at a costume shop in a sketchy location that turned out to be pretty amazing. And they had lots of crazy color choices, which is what I wanted. The problem with traditional "cancer patient" wig places is that they only have "normal hair" wig options, and that's really not what I want. So, I spent a good 30 minutes trying on everything in every size and color. Green, purple, black, even a SCARY red one (like fire engine red) which Keith thought would look good (it didn't!). The purple one was just not the color I wanted...too much lavender, making me look thanks! The green one was beautiful, but had a permanent zigzag part down the center which was probably designed to go with an alien costume, but just didn't work for me. (And I'm kind of bummed, because it was pretty cool). Black, orange, yellow, lime green...all clearly "no go's" because they make me look sicker than I already feel. 

Then the husband redeemed himself after the red wig when he found my Merida wig. Yes, the cartoon girl from Brave. Even before this diagnosis, I have wanted her hair. That's right, I'm jealous of a cartoon Disney princess, I can admit it. Well, orange isn't really the color for me, so he found the wig in a beautiful auburny-purple color (if I drank wine, I'm sure I would know which red wine it looks most like). And it's long, and curly, and I love it. So does the girl child, by the way. And then I found another wig, which should satisfy the "aren't you getting normal hair" member of the family: long, straight, and a caramel color (according to the daughter). So, now there's three wigs when you add in the Katy Perry blue wig. Should be fun! Though I still kinda want that green one...

After the wigs, we stopped at Target to get my next round of meds (the one that you have to take during chemo...the pharmacy doesn't usually stock it, so you have to order ahead). These meds are like gold, so I have to make sure that I have them in time for the next round of chemo. And we have to get some basic stuff, so we're wandering around the aisles. And this is when I realize that I have felt pretty bad all day: dizzy, out of breath, tired. When we're walking around, I can't even make decisions about what to grab off the shelf because I do not actually care. I really and truly have no energy left to care. I have hit the wall. 

Today is the first day that I've felt like a cancer patient. Really and truly felt like a sick person walking around. I'm sure part of it is this out of breath thing which is new. I'm also sure it has a little to do with the fact that I look like a refugee from a third world concentration camp. We laugh about the stripes and bald spots on my head where my hair has fallen out. There is little hair left now, but it is so cold outside that I haven't shaved it all off yet. (That'll probably happen by Monday).

Home for a nap! I didn't even help Keith bring any of the bags in the house or put anything away. Completely passed out on the couch. And I do not even feel bad about it!