A Thankful Thanksgiving

Right now I should be going through my closet and drawers, getting rid of everything I don't want or need anymore. I also should be moving my winter clothes out of storage and putting my summer clothes into storage. I've been meaning to do this for some time now, but keep putting it off. Lazy lazy. Instead, I'd rather blog... but luckily there's time in this day for both.

Sometimes I get down and think that my life really sucks right now. This doesn't happen so often anymore; I'm getting pretty used to what my life is and what it has become. I guess, in my own way, I've accepted that cancer is just going to have to be a part of my life. There's really no point to fighting it; I have cancer and there's no turning back.

I think it's so strange that in the days leading up to diagnosis, I was so terrified that I could have cancer. The entire thought was just plain scary. And now, only 4 months later, I'm pretty used to it. I think it's that during treatment, you really have to focus on getting better. There are set dates for chemo and days that I know I'll feel like crap and weeks where I'm feeling pretty dandy. While there's still plenty of room for the unexpected, I know, more or less, what I'll be doing and how I'll be feeling from now until the beginning of January. Everything thereafter is still up in the air, but you know what? The first week of January seems like a long time from now, and I can deal with waiting to know what's going to happen after that. Because, again, there's no use fighting it. "It is what it is" has become the mantra defining my existence.

Anyway, let's get to the festive point of this post: I may have cancer, but I still have A LOT to be thankful for this Thanksgiving.

Family: I am so thankful for my family. They've been really supportive through this whole debacle.

My parents came to almost every appointment in the beginning, which was great because my head was swimming. And now they've given me the space to go to my appointments alone, which is what I prefer. They've allowed me to deal with cancer my way, and they have always put my preferences first. I really appreciate that. And for some reason, I thought they'd push me to get a bilateral mastectomy, but that hasn't happened at all. My treatment has been very much up to my doctors and to me. I think, given my young age, being able to make some of these decisions has given me the (false?) feeling that I have some control in this situation. Plus, they spoil me like crazy and I can't help but absolutely adore that...

My sister is the one who has to deal with me the most, and she also has handled me with grace. She lets me complain about feeling like crap without EVER rolling her eyes or getting tired of my whining. She doesn't let me overindulge in self-pity, either, which I think keeps me healthy. She calls me every day after she's done with student teaching to check if I need anything. She has included me to do things with her friends and boyfriend, and I feel like I can always rely on her to be there if and when I need her. She doesn't get mad at me for making her house messy (well, messier might be more accurate) and we take care of each other. Living together again has been the best part of having cancer. We've more or less always been close, but I think this experience has changed, and strengthened, our relationship in a way that will have a lasting impact. I wish everyone could have a sister, and I wish everyone could have a sister like Susan.

My brothers aren't around as much, and that's just fine. I know I have their support, and if I were to be in a bad way (well, a worse way...), I know they'd be here as soon as they could. It would freak me out if they started calling me every day to check on me. Actually, it would probably annoy me a lot. They treat me pretty much the same way as before cancer, and that has a very normalizing effect. I savor things that make me feel normal anymore.

Friends: I am so thankful for all of my friends. They all play different functions through this mess, but I am grateful to have so many people who've stepped up to the plate to help me out.

My friend Amber has been a really great and dependable friend. She knows what hardship is and she knows what it really means to always be there. We've been friends since I was 12, which means we've been friends longer than we haven't. We drifted apart through college, but it feels really nice to know that even through some really hard times, she'll be there. Amber knows how to be a good friend, which in times like these means a lot of selflessness. With her, it isn't "I'll always be there for you unless I have something more important going on," and that's actually something that's very rare to find in a friend. It means a lot that she has made so much time for me when she was pretty busy with a move to the city and a new job.

I'm also very thankful for the friends who made my California trip possible, Kelsey, Sonja and Heather. It's so nice to be able to look back on treatment and remember that it wasn't always terrible and that I had a really good time in California. I was able to not allow cancer take away all my fun, which is a proud accomplishment for me . But it would be untrue to pretend that my trip would have been possible without these three wonderful women. That was such a great trip, and it did wonders for my mental state to get out of the state!

And all the Winter Parkers, whom I don't hear from much, are also a happy source of support. They're all busy and most of them weren't friends I'd talk on the phone with anyway, but I know that when I'm in town, I can count on them to show me a good time. My friend Janet, though, has made a special effort to write me every week and send me some really lovely gifts. I was surprised to find such a faithful friend in Janet because I had no idea she cared so much! She's taken great care of me, and it's wonderful to know someone as caring and fun as she is.

There are also a bunch of random things that I'm really thankful for this year, and they don't fall as neatly under little categories. Or maybe I'm just getting lazy and feel like writing a little more free form...

I'm very thankful that three years ago, when I was moving to the mountains, my dad and I sat down to discuss what kind of insurance to get. I'm so very thankful that we chose a good plan that has covered me well, and that Celtic Insurance has been really great. I'm also thankful that my parents have been paying for my insurance all this time. Like I said, I'm spoiled. I'm rotten. There's no getting around it. :)

In addition to the spoiling, I'm so lucky and thankful to have parents who can afford to take care of me the way they have. It's been a blessing to be able to not work through this time. Yes, there are days when I'm bored and would work in a heartbeat. But there are quite a few days when I feel like trash and cannot even imagine having to pull it together to go to work. The women and men who work through chemo are superheroes in my mind, and I'm so fortunate to have this part of the journey taken care of.

I think for a lot of people, the money stuff-- insurance, medical bills, working-- makes cancer all the more stressful and terrible. I think that if I had no insurance and had to work through chemo, I wouldn't have the good humor to call this "an adventure" but the good sense to call it "a disaster." Cancer this young is awful, yes, but at the same time, I can sometimes see it as the best time to be taking time off (from taking time off... heh...). I could probably have afforded this whole shenanigan, but it would have depleted my life savings. And as my parents put it when they handed me a check, "We're so proud of you working and saving your money and we don't want you to have to spend it all on being sick." Really, I have the best parents in the world. :)

I have so many things that others in this world do not, and for that I'm thankful. I have no needs right now. I have the basics-- food, shelter, warmth-- and then so much more. There is nothing more I could ask for. Which is good because the family has been planning on going to Mexico for Christmas, and I'm still hoping to go. And part of going to Mexico means no presents. Which is great, because...

I have everything I want.

(Well, except for a clean bill of health, but we'll get to that!)

Happy Thanksgiving, everyone! I am thankful for you!

Happy Preamble

The post I just wrote is kinda dark and depressing, a departure from my typical upbeat, you-can-do-it attitude. So in order to balance that out, I thought I'd better share something that's happy.

I missed the Roger Clyne and the Peacemakers show.

OK, that's not happy. I was feeling like total poo the night of the show. I had gone in to the chemo place to get extra fluids pumped into me, but they didn't help. I really wanted to go, but after a while I was realizing that what I REALLY wanted to do was go to sleep. So I decided to give my ticket away and get some extra rest. I was bummed, but more focused on the fact that I felt like a miserable sack of crap.

When I woke up the next day, I still had some residual chemo ickies, but they were fading (finally!). I peed like 20 times before noon, and I'm not exaggerating. I guess the fluids they pumped into me lasted for about a day and then started to really want to come out! As the day went on (and so did the peeing...!), I started to feel better and better. I called up my good buddy Amber, who had come up to Fort Collins the night of the show to see it with me, to see what she was doing. I wondered if she might maybe go with me to the show that night, Saturday night, in Denver, even though she had already come all the way to Fort Collins to see the show here. She was all about it, and was really supportive. We went to see RCPM in Denver and I had a blast! The Peacemakers are maybe a little better when mixed with Mexican beer and some tequila, but it was still really fun. Always a great show!

It really gave me the feeling that I wasn't letting cancer take all my fun away. Actually, I think I have a pretty good time, given the current circumstances.

The Ghost and The Shadow

I've finally made myself comfortable enough to nestle down and post a blog for you (blog a post for you?). I was cold, so I put on a hat. When my bald head gets cold, the rest of me is cold. I now wear a nightcap to bed most nights! (Usually I would have another sort of nightcap... *wink*) I put on a fleece to help warm me up. I am wearing the fuzzy Halloween socks Janet gave me for my birthday, and my slippers are sealing in the warmth to my tootsies. I just microwaved some hot water for a cup of green tea (which has mint in it, unfortunately, but maybe it'll be good anyway... don't especially care for minty tea).

Anecdotal Interruption: The green tea came from my Chemo Angel. I signed up for this program called "Chemo Angels," in which unfamiliar volunteers get matched to people going through chemotherapy treatment. They write letters and give little presents. I thought, "If I have to have chemo, then I may as well get some free stuff out of it." Yeah. Working the system.

Anyway, now that I'm comfy (although I'm going to have to squeeze this tea bag out after it's done steeping), I thought I'd like to share with you, and simultaneously record for me, what it feels like to go through chemo. To me, at least.

I know I described before that chemo felt like the worst hangover you've ever had, and that it doesn't relent for three to four days. While that is a somewhat accurate description, I'd like to get more specific.

For one, I should note that weekly Taxol and triweekly FEC are two totally different cats. Weekly Taxol is like our house cat Lola; kind of annoying, tiring and a bit of a nuisance. FEC is more like a feral, starving and rabid big game cat. It consumes you almost immediately and entirely, and then ravages you until you feel like you have nothing left. In other words, Taxol was "easy" chemo and FEC is... not easy.

Another difference is that Taxol left me in a constant state of "so-so." I would have extra-tired days and then I would have regular-tired days. I was functioning at maybe 65-80% at all times. With FEC, the first few days I'm at maybe a 20%, but that number goes up gradually and continually until I'd say I'm about 90% or more. Hard to say because I have a feeling I'm really out of shape, so that makes a difference.

So what's this about The Ghost and The Shadow? Well, it's my very literary (yes, I'm literary now) way of describing how FEC makes me feel. There are two aspects, naturally: The Ghost and The Shadow.

The Ghost is a feeling. It's not something tangible; it's more like a diaphanous entity that clings to me and won't leave until all the FEC seems to be out of my system. The Ghost is a lingering sensation that things are not right. It's an all-over feeling, but it mostly resides in my head (not in a psychobabble way, more akin to a headache). The Ghost makes me feel like no matter what I'm doing, I don't want to be doing it, and if I were to do something else, I wouldn't want to be doing that either. It's a restless feeling, a feeling that nothing is or feels right or good, and nothing can be done to change that fact.

When it gets almost unbearable, it's a feeling that I know I need to sleep but I'm tired and bored of sleeping, yet don't have the energy to do anything else. So I lie on the couch or in my bed like a lump until it's an acceptable time to take a pill to make me sleepy again. Everything becomes a chore, from getting up to go to the bathroom to trying to eat something. To changing the channel on the TV, to propping up a pillow. When I'm really sick, I can hardly move and I just sleep through The Ghost. But once I start coming back to myself, I feel like I can't hold still; that if I just do the right thing I will feel better. It's a feeling of struggle, as if I could work through it somehow but just can't seem to make it go away.

The Shadow, on the other hand, is how I would describe what I become. I am no longer Carrie in the typical sense, but a shadow of Carrie. The same shape, size and approximate image of Carrie, just fainter. Weaker. Becoming The Shadow breaks my life down into very small bits-- bits that are manageable to my strength at the time. If I am strong enough, I'll go to breakfast. If I need to go to the doctor's office, I go to the doctor's office. I do very few things I don't HAVE to do, and I perform only the mandatory tasks.

As The Shadow, my mood and thoughts get very dark and gloomy. When I feel sick, I just can't help but only see the negative side of things and feel hopeless. I think that's a natural reaction to feeling like sludge. When I am The Shadow, I get the increasing feeling that it is not humanly possible for me to live a full and long life without getting cancer again. I realize that many people beat cancer once only to have it come back to kill them. I think about the women living with metastatic disease with no end date for treatment in sight. I wonder whether I have the strength to fight this disease again. I consider that they say if I live another 5 or 7 years (not clear which is the magic number), then I can rest easy, that I can call myself "cured." But then I realize that dying in 5 to 7 years is really pretty soon, too soon. I wonder if I'll ever feel better, and if I don't, what I will do. How much is your life worth when you feel like crap? Like I said, my thoughts get very dark. I even asked my poor sister on my worst day, "Do you think I'll live very long?" Unfair question, and I hope I didn't scare or creep the hell out of her. But when you feel that miserable, it's hard to feel like you're going to live forever.

The Shadow has forced me to start thinking about my own mortality. I think most people my age are still in the "I'm gonna live forever" mentality. I wouldn't say I'm staring Death in the face and trying to see who will flinch first. I'm just realizing more that maybe I won't live to be 75. Or 50. It's scary, so I don't think about it that deeply (at least not yet) but the questions having to do with my future supply variable answers depending on just how long that future might be.

Sometimes I still feel like I'm gonna live forever though. So don't get too worried. It's just that the major fallacy that has come to define me-- "You're really so healthy, except you have cancer"-- mixes things up considerably.

DISCLAIMER: I hope that this post didn't freak you out or make you think I'm all Death And Doom all the time. I just wanted to share what chemo is like for me, and to have it written down for me sometime later, when all this is just a bad phase I went through in my twenties.

The Bottom of the Barrel

You know the term "scraping from the bottom of the barrel?" Well, if you were to perform said operation, you would be scraping me up. At least that's how I feel!

I'm back into the chemo swing, which is good and bad. Good to make more progress towards the eventual finish line, and bad because it makes me feel all crappy. I am pretty tired and am about to drug myself to sleep. Ugh.

I was having some back pain that was scaring me, but my x-rays came back clean. My onc nurse think I would benefit from some therapeutic massage. Too bad I don't have a sexy boyfriend to rub my back! But I do have some contact information for a foundation around here that will get me some free massage. YAY!

I think Winter Park opened today; this is the first year I won't be there as a resident in three years. :(

Anyway, to the bat cave. Just wanted you to know I'm still alive. Barely. ;)

Weekend Update!

Hey everyone, just checking in to say that I'm still feeling good! And I had a really nice weekend.

Someone recommended I watch the series Freaks and Geeks on DVD. It's so great! I'm addicted. So I watched a bunch of episodes of that on my cool TV. That was fun.

Also, my sister and her boyfriend came home yesterday with a bunch of groceries. She said, "We're making sushi tonight!" I thought to myself "Great, and I can't have any." But in the end, they were making sushi with cooked fish, and it was delicious! And it was really fun! My taste buds are almost 100% back which makes my life so much better. So Saturday night was a blast!

And today I didn't do much. I did go for a nice walk. It's perfect walking weather. And I think I might move myself up to attempting to jog. It would be so nice to feel in shape for when I do eventually go skiing. I'm thinking I'll go sometime after Thanksgiving.

I'm really hoping that the next treatment goes a little better than this last one has. I was feeling funky for 8 days! This time I get chemo on Tuesday, November 18, and there's a Peacemakers concert on Friday, November 21. I'm pretty much saying that I WILL GO to the show, but if I'm in really rough shape... nah I'm not even gonna consider that. And they play in Denver the next night, so...

I'm also glad that I should be able to taste my Thanksgiving dinner. The timing is pretty good for that one.

I'm a little nervous for the next treatment because the last one was so unpleasant, but I'm hoping that since I'll be going into it feeling good, it won't be as bad as last time. Last time I was feeling like I was getting sick, plus I also felt pretty beaten down by 12 weeks of Taxol. So please hope and pray with me that FEC #2 will be easier than #1!

I think I might be going to Denver next weekend to visit some friends and do some fun stuff. Maybe catch a Nuggets game or go to the art museum. Who knows?!?! I need to find more stuff to do with my newfound energy!

Why?

Why is this happening to me? It's still not a bad dream, or else I'm still not waking up. I think the worst part is, I'm not alone. So why is this happening to so many young women?

I believe a cure to cancer will be found in my lifetime. I have to believe this.

Jen, I'm thinking about you. Catherine, I'm thinking about you. All of you YSC girls, I'm thinking about you. Everyone in the world struggling with cancer, I am thinking about you tonight.

This has got to stop. Cancer has got to stop. It makes me literally sick to think that women are diagnosed with this horrible disease every day.

This has got to stop.

Thursdays

This is the first Thursday in 14 weeks that I have felt GOOD. Hooray for good days!

Today is the Day!

Today is the day that I finally feel as good as I usually do. YAY! I wonder how I'll be feeling in the next 12 days (that's how many days until my next treatment, November 18), hopefully better and better!

It was really great yesterday to go to my follow up and not have to get chemo. A girl could get used to this.

Those really sick days are almost a memory (short memory, huh?); I'd rather live in the moment when I feel well. I know there will be more sick days to come, but today is the first day I haven't needed to lie down and haven't felt exhausted by 7:30 p.m. and haven't needed a nausea pill. The feeling in the bottoms of my feet is back. And the bad taste in my mouth is gone. While I am losing my hair again, my nails are still dark, and I still can't taste that well, I'd say we're makin' progress folks. I went for a walk to the grocery store to pick up ingredients to make banana nut muffins with streusel topping. And my back didn't hurt enough to take any Tylenol! I hope I'm not speaking too soon, but I'm planning on feeling better and better, and the original goal was to be feeling good by Friday. Wahoo, I'm early!

If you'd like a description of what a bad chemo day feels like, it feels like the WORST hangover you've ever had for about the first three days. And it gets better VERY slowly. And for the past 8 days I've had an "icky" feeling that endures all day, which somehow involves a mild headache, a weird tummy, and a restlessness in my body.

Well, it's not yet 10:00 p.m. and I'm tired. I had a pretty boring day, but at least I felt good! I hope every treatment I can be feeling good by the Wednesday 9 days after.

I'm thinking about going skiing at Copper this weekend. Anyone planning on going? Or want to? I'm sure it'll just be some groomers, but I know it's been snowing up there...

YARGH!

My hair is falling out again! This is so annoying! And messy!

What Happens At Chemo Doesn't Stay At Chemo

This isn't Las Vegas, folks, it's Cancerland! And I've been wanting to share with you what exactly goes on at chemo. Unfortunately for my viewers at home, I usually go to chemo alone, so there's nobody to take pictures of the whole process. Because I was nervous and scared to start my new drugs, and also because I knew I wouldn't be getting my sleepytime Benadryl, my sister came with me on Tuesday to keep me company, calm my nerves, and fight off boredom. She also volunteered to be my documentary photographer for this post!

So here's what happens, if you ever wondered...

WARNING: I look like a "sick person" in this post. I didn't really know how I looked until I saw these photos! I think it's partially the hat... and being hooked up to machines doesn't help, either...

What Happens at Chemo...

Here we are, getting ready for chemo. Each time I go, I get my little table ready with all my crap, including water, juice, snacks, my phone, Gameboy, etc. I also get my blankets ready, take off my shoes, remove my jacket and get my prayer shawl (thanks Auntie Alice!) around me so I don't get cold.

Usually someone takes my vitals first (temperature, blood pressure and oxygenation), but this time we got right to the bloodwork and my vitals were taken later. Here, my favorite nurse, Nurse K., is rubbing some sort of sterilizer stuff all over my arm where my port is. This sterilizes my skin so we don't have cooties all over. It feels cold and smells like rubbing alcohol...

Once my arm is cleaned, Nurse K. finds my port with her fingers. She then puts the needle (eek!) right into my port. It doesn't hurt, though, because I put lidocaine on it about 45 minutes beforehand. The yellow thing in the picture is sort of like a handle on the needle.

Then Nurse K. tapes down the needle and tubes so that they don't get caught on things or torn out of my arm (ouch, that would seriously hurt!). Before, they weren't taped this securely because usually the needle came out at the end of chemo. But with the new drugs, I get hydration (saline) the next day, so I kept the needle in my arm overnight to avoid getting poked again.

Once everything is taped down, Nurse K. pushes a syringe of saline into my port. This clears it out, flushing crud out of the way. Then she pulls blood right from the same port, proving the the passageway is clear. My blood will be tested after this to make sure my white counts, red counts and platelets are high enough to receieve chemotherapy. You can tell it's working cuz you can see my blood! EWWW!

Nurse K. pulls two (I think) syringes of blood from my port. Don't worry; I can't feel any of it. Then the blood gets transferred into three separate vaccuum vials to be tested.

Here I am, all hooked up and waiting for my blood test results!

Me again, attached to many things. On the left, there's a machine taking my blood pressure. On my finger on the right side (my left finger though), is a sensor taking my blood oxygenation. (All that usually happens very first, but it doesn't really matter when...) And on the right, there's Nurse K. messing with some tubes of stuff going in my veins.

We got my blood test results back, and though my white blood cell (especially my granulocytes, the WBCs that fight infection) and red blood cell counts were a little low, I was still OK to get chemo. With the new chemo drugs, I take a special anti-nausea medicine called Emend. This is my Emend pill, which I got the clearance to take because I was getting chemo. I take this pill after my blood tests come back OK, and before chemo goes in me. I have two other pills to take the day after, and the day after that too.

Here's a picture of my chemo meds and a pump. The pump's mechanism is still a mystery to me, but somehow that green machine controls how quickly liquid is infused (or dripped) into me. I wanted to show you the Epirubicin, which is red. It actually turns your pee red. Well, pinkish orange. I have receive lots of bags of fluids: anti-nausea medication, a steroid, three different chemo meds, and saline hydration.

Me, hanging out, gettin' chemo, like I do...

Here's my arm, after I was all done infusing chemo into me. When all those meds were in me, Nurse K. flushed my port again with saline and then put heparin, an anti-coagulant, in my port to keep blood cells from sticking to my port. After that, my arm was all packed up so that they needle could stay in my arm, allowing us to avoid re-accessing it again the next day. We're done, let's go!

I hope you enjoyed our educational segment on CarrieHatesCancer today. Please stay tuned, and as always, thanks you for your support!

Alternative Therapy

I forgot to mention some alternative therapy I received about a week ago...

RETAIL THERAPY!

Thanks to my lovely mom, I got two new coats, three news hats, and a new scarf. I will probably have pictures later on... but lemme just say, retail therapy kicks chemotherapy's butt EVERY TIME. I think Mom was feeling bad for me because I was starting the new scary drugs.

So thanks Mom, for brightening my days!