Friday, June 22, 2012

Well, that was fun...

Not.

It's been 2 months since my last post. During that time, I underwent that nasty chemo I posted about. I'm now 2 1/2 weeks PFC (post final chemo, or as I like to say, post fucking chemo), and I'm getting stronger every day.

I told you all that I'd let you know how this last round of chemo went. It was... Well, it wasn't something I'd ever want to repeat. Each treatment took place on a Monday and the shot I talked about on the following Tuesday. By that afternoon, I'd be in bed -- for a minimum of 4 days. You want to talk about fatigue? I've never been so tired in all my life. I was also nauseous the entire time, but never once did I get sick. Like I said, thank goodness for all the anti-nausea drugs I was given. They worked -- as best they could.

My husband and kids took wonderful care of me during those weeks. On the rare times when I'd get hungry, they'd run out and get me whatever it was I was craving -- which was, oddly enough, usually McDonald's. Weird, I know, but hey -- those little cheeseburgers hit the spot. The kids would check on me often during the day, refilling my water glass (gotta get those fluids in no matter how icky you feel) or they'd just sit with me to chat whenever I'd find myself awake.

Typically by Saturday, I'd feel a little better. Good enough to get out of bed and move to the couch, at least. I'd spend the next week slowly recovering, only to turn around and have another treatment the following Monday. I had four of these treatments in all, each 2 weeks apart. They were grueling, both physically and mentally, but you know what? I DID IT.

I said from the moment I was diagnosed that I'll do whatever I have to to beat this. I'm happy to say that I've completed the first hurdle -- I'm DONE with chemo!! Yes, I'll still be getting Herceptin every 3 weeks for the next 9 months to treat the HER2 tumor, but that's not considered a chemo drug. It's considered a "targeted therapy" -- a protein.

I AM DONE WITH CHEMO! Man, it's so great to say that :)

Now, on to the next step -- surgery. I'll be having a single mastectomy in a few weeks. They'll also do a SNB (sentinel node biopsy) beforehand to see if the cancer has traveled into my lymph nodes. We're hoping that by doing chemo first, this hasn't happened. Everyone keep your fingers crossed that's true.

Surgery is going to be hard on me -- again, not just physically, but mentally as well. I like my boobs. I've always liked my boobs. And now I have to lose one. Yes, I know they can do amazing things with reconstruction. And yes, I have a great plastic surgeon lined up to do the work. But there's nothing like the real thing. Nothing like the sensations only the real thing can give you. I'm going to miss that. So much.

In the meantime, I'm just taking each day as it comes. Recovery is a slow process, but like I said, I'm getting better every day. I even went to the store yesterday AND cooked dinner for my family! Crazy, I tell ya :) I'm working some on my writing, too. My creativity waned during the chemo process, and I'm sure it will after surgery as well. But for now, it feels good to get a few words down as I can.

Also, now that I'm done with chemo (I can't say that enough!), I'm waiting for my hair to start growing back. I'm not sure if you guys know this, but I'm not always the most patient person. Over the last couple of days I have felt a difference in my scalp, but I don't see anything up there yet. All I can says is: Go, hair follicles! GO! I keep rubbing my head, encouraging the little guys to sprout. Soon, hopefully. Soon.

That's my update for now. I'm off to see if I can get a little writing done :) Everyone take care and have a great weekend!

Monday, April 23, 2012

I'm so bad...

I ordered this yesterday, because, you know, I just had to... I'm so bad... :)

Saturday, April 21, 2012

F'ing chemo? You betcha...

I was chatting via text the other day with my SIL (sister-in-law), and she was asking about the next round of chemo that I start on Monday (the Adiramyacin/Cytoxin cocktail). I've just finished 12 weeks of Taxol/Herceptin (that's 3 fucking months -- MONTHS, people), which were really starting to take it's toll on me. Besides feeling like I've had the flu that entire time, I've had other SE's (side effects) as well. Neuropathy in my fingertips, hair loss, nose bleeds, acne and other skin issues, hormonal changes (chemopause) that can wig me out without notice, hot/cold flashes -- those are just to name a few. But this next round... Sigh. I'm really trying to think positive on it because this is the treatment that, when they show the awful SE's of chemo in the movies, is what they portray and what everyone thinks of. My oncologist even told me that they used to give this type of chemo in-patient because patients got so sick. Think of non-stop barfing. Sounds like fun, huh?

Thank goodness times -- and medications -- have changed. I'm told there are some great drugs out there now to prevent chemo-induced sickness. I'll be given about 3 different types of those drugs before they pump me up with the chemo. Can I still end up getting sick? Sure. Will I? I have no idea. I'm hoping not. Most people I talk to now, who have had the pre-meds, haven't. Then there's the shot I have to go in for the day after because the AC makes your white blood count drop so quickly. The shot rebuilds the white blood cells inside your bone marrow. But as a side effect of that happening, your bones can hurt. Everywhere. The pain can range from not bad to debilitating. Again, I have no idea what to expect.

But going back to that text conversation I had with my SIL. She was asking if this round (the 4 bi-weekly treatments I'll have of AC) was my last, after of course, it kicks my ass. Fucking chemo, she said.

Fucking chemo, is right.

But as soon as I read that, it got me to thinking. The chemo is working. My tumors are shrinking. I can tell, and my oncologist has told me the same thing. So, in the end, thank goodness for chemo. There's nothing I like about it (okay, well maybe I like the fact that I don't have to shave my legs at all), but it's WORKING.

I have to keep repeating that over and over in my head. It's working.

I'm going to be freaked out on Monday when I start the AC. I've heard it's called The Red Devil, because it's a red fluid that comes in tubes and has the potential of making you feel like you're in a living hell. It's also hand-injected by the nurse, no IV pump taking care of this one. I'm sure there will be tears on my part (big shocker there, since so much makes me cry anymore), and a boatload of anxiety (thank heavens for Ativan). But, like everything else so far, I'm going to take a deep breath and do it. Did you hear that? I WILL DO IT. I simply have to.

On that note, wish me luck? Or maybe just toss a little good juju into the air on Monday around noon. I'll grab on to it with both hands and hold on tight, I promise. Afterwards, I'll let you all know how it goes...

Thursday, April 12, 2012

I miss normal. I miss me.

I miss normal.
I miss feeling good.
I miss my hair.
I miss my taste buds.
I miss the energy I used to take for granted.
I miss the feeling in my fingertips. 
I miss leaving the house without having to decide whether to wear a scarf or a wig on my head.
I miss my imagination.
I miss... God, there's so much more. 

What it comes down to is that I simply miss me.

Yesterday and today kind of tossed a few of those things that I miss right back in my face. I visited with some great friends at this year's Romantic Time's convention (which is being held here in Chicago) -- then I came home and got really sad.

I didn't want to feel so worn out at my publisher's party last night. I didn't want to sit on the sidelines and watch everyone else out on the dance floor having fun. I didn't want to drink water instead of having a glass or two of wine. I didn't want to have to go to bed as early as I did.

Don't get me wrong -- I loved all the hugs. The gentle hands rubbing my back. I loved everyone telling me how good I looked, even though I hate that there is a reason they wanted to tell me that. I loved meeting those people in person that I've known for years only online. I loved seeing all the friends I've made at all the conventions I'd attended before. I loved the laughs I shared. All of that was so great.

It's just that I miss the old me. The girl who would do up her hair just-so before the party started. The girl who would've had at least one glass of red (and hell, probably more) before the night was over. The girl would would've been out on that dance floor shakin' her groove thang until the party was shut down, the girl who would've then moved on with the other party-goers to the bar or lobby to just sit and talk (and maybe have another drink).

I miss that girl, damn it. I miss the hell out of her.

I'm told she's still around, somewhere inside me. She may come out the other end of this cancer gig the same, and she may not. I don't know what to expect, and I'm not going to lie and say that doesn't freak me out a little.

Something new pops up for me every day, whether it be an emotion, a side effect or something else I have to struggle through. There is no normal for me right now. My old normal will never be again, and I get a little wiggy when I think too hard on what my new normal has in store for me. For now, though, I don't have any choice other than to take a deep breath and try to accept what I've been handed. A lot of the things I miss are temporarily gone, I understand that. My hair will fill in. My energy level will build up. My tasted buds and my wilted imagination will make a return appearance. I'm just hoping that the girl I miss, the old me, I just hope that she decides to comes back to me, too.

Tuesday, April 3, 2012

Finding the humor... some way

I'd like to use this post to go back a little and fill in some of the cracks from my first post. If you read the comments, you would've seen Maggie's that mentioned I forgot to talk about my FTD campaign. It's kind of a funny story...

After I had my mammogram and ultrasound, they gave me copies to take with me when I visited the breast surgeon. I couldn't read a mammogram if you asked me to (even though I could clearly see the area where my tumors were, but the angles and what's up or down? Nope.). The ultrasound, however, came out a little more clear to me. But it was my middle daughter who noticed that one of the tumors, the HER2 positive one, the one that pretty much grew within that month between my SBE's (self-breast exams), was in the shape of a duck. Well, I decided to name the thing Daffy. Fuck the duck, I'd say. Daffy, the little bastard, is going down. Mari Freeman, who has been one of my rocks through this whole thing, found a picture for me of Bugs Bunny shooting Daffy's head off. I found the picture to be hilarious, and absolutely perfect. I mentioned this on my Facebook page, and thus the FTD campaign was born.



Good new is? The Herceptin -- the drug specifically targeted toward HER2 tumors -- is working. After about three weeks into chemo, I couldn't feel the hard lump anymore. Some thickening of the tissue where it was, yes. But not the hard lump. At six weeks, I saw my oncologist and he said the same thing. Thickening of the tissue, but no lump. I'm quiet about this good news. I LOVE that the chemo is working. I hate being on it, but you know what I mean. I guess I've just had so much bad news this year that it's hard to let the good in and celebrate. Does that make sense?

At my visit with the breast surgeon, she scheduled an MRI. Tara Nina, in the comments, mentioned that she's an MRI tech. Bless you, Tara. If I would have to deal with people like me every day... Sheesh. Yep, you guessed it, I'm claustrophobic. Terribly. I hate flying because you're shooting through the sky in a tiny metal tube. I hate crowded elevators because I'm always the shortest and I just KNOW everyone else is taking up all the air inside there. I'll wait forever at a packed event to leave so I can avoid that mad rush of people who typically tower over me. But none of those things compare to how I felt during that MRI. Holy hell. The surgeon even gave me Valium -- the lowest dose I imagine, since it didn't help AT ALL. I had to come out of the tube 3 times. Each time I waited until that itch inside me couldn't be ignored anymore. It took a lot of talking to myself, and keeping my eyes closed tight, to make it through. I know more MRI's are in my future, and now I know to ask for a bit bigger dose of Valium. Better living though chemistry -- that's the new motto in our house!

At the appointment with my oncologist (which I had during the worst snowstorm we had this year -- how's that for drama?) he ordered a CAT scan to check for tumors elsewhere in my body. This was a big one for me, since my sister passed from end stage pancreatic cancer in June 2005. I was assured by my oncologist that breast cancer can't travel to the pancreas, but still. Scary to say the least. I'd had a CAT scan before, but I forgot how the contrast injection made me feel. As soon as it was pumped in through the IV, my heart nearly beat out of my chest and I had a moment of whooooa, I can't breathe. That lasted only a few seconds before the rush hit lower. The contrast seriously makes you feel like you've wet your pants! It's the oddest feeling, I swear. It's something to get a little laugh at, and it would've been funnier if my heart hadn't been racing the way it was. Something to keep in mind for the next time. And yay, the CAT scan came back clear. Another one of those good news things that I keep close and hold tight.

My onc also ran a blood test for the BRCA 1 & 2 genetic markers. Women who test positive for the BRCA genes have an 80-90% chance of having breast cancer in their lifetime, and a 10% chance of developing ovarian cancer. Men who carry the gene are at risk for pancreatic and prostate cancer. Because of my sister's cancer and because of my young age at diagnosis, I was a candidate to have this test done. It's a very expensive test, and most insurance companies require some sort of history or other factors for them to cover the cost -- which just sucks. I'm a big believer that every woman should have this test done, but with a price tag of $3600 (yes you read that right), that's not feasible. If the test came back positive, my treatment plan would've included a double mastectomy and having my ovaries removed. Drastic, but necessary. Thankfully, my BRCA 1 & 2 came back negative. I don't carry the gene.

Treatment update: I'm halfway through my weeks of treatments (20 weeks, 16 treatments)! I had #10 out of 12 Taxol/Herceptin infusions yesterday. I receive a few premeds beforehand to combat nausea, etc, one of which is Benadryl. The combo of the Benadryl and the Ativan I take makes me so sleepy. I came home afterward tired and irritable, but because of the steroids they give me during the premeds, I couldn't nap. Ugh. I feel pretty good today, knock on wood. It's usually day 3 or 4 after treatment when I feel the full effects of the fatigue. Only 2 more of these to go, then I move on to Adriamyacin/Cytoxin. It's called the Red Devil, and it's the chemo that has the potential to make me sick. Not looking forward to it at all, but it's all one day at a time, right?

Yep, one day at a time. That's all we can do.

Kristin

Saturday, March 31, 2012

Let's Start Here

(Disclaimer: This blog is about MY story. I'm not a doctor, I don't pretend to be one. Any advice I may offer is just that: my own personal advice. Not everything on here will be happy-go-lucky. There's a lot about cancer I hate. There's a lot about my treatments that I hate more. Most of the time I try to stay positive. I succeed most days, some I don't. If you're okay with that, read on...)

Hi, I'm Kristin. I'm two months into treatment for Invasive Ductal Breast Cancer. You're probably asking why would I start a blog now? Why not document my journey (Blech, I kinda hate that word. Anyone got anything better?) from the get-go?

Sigh. I thought about it off and on. I just... I don't know. Wasn't there yet, I guess. I couldn't. But I decided I'm ready and now's as good of a time as any. So, let's go. 

Before I go back and fill you all in on this fantastic experience of mine, let me tell you a little bit about myself. First off, I'm a wife and a mom. I have an amazing husband and three great kids. They're older now (the kids, not the husband. Well, wait. Maybe he is too. Hell, so am I, come to think of it.), ages 23, 20 and almost 18. This coming May, I'll be married for 25 years. I can't tell you how pissed off I am that I'll be celebrating such a huge milestone in my life while being on chemo. It sucks, big, fat...

Anyway. I digress...

Aside from being a wife and mom, I'm also a writer. I write hot and steamy romance. Erotic romance. Yep, the kind that gets you all worked up while leaving you feeling all ooey-gooey, lovey-dovey inside. It's just what I do. Well, it's what I was doing. Which brings us to my story...

I think it was early November, maybe mid-November. I was lying in bed and watching a little TV, listening to my husband snore softly. I was getting all comfy, and my hand just slid to rest underneath my breast. You ladies, you can relate to this position, right? I liken it to men sitting with their hands stuffed in their pants. You know what I'm talking about... I have no idea what got me to thinking that it had been a while since I did any sort of self breast exam. I admit, I was one of the worst at doing this. I was always scared I'd find something, you know? So I start to tentatively feel around. And...there was something there. Or was there? It felt... It was like this little ridge at the edge of my breast. I remember having a huge moment of what the hell before reaching for my phone on my nightstand. One smartphone internet search led to two or three. Oh, and hey, lookee there. Turns out ridges in breast tissue are NORMAL. What a relief! Still, I got up out of bed and snuck into the bathroom, because you're supposed to do a visual check of your breasts whenever you do an exam, right? And oh my god, they looked normal, too. I went to sleep that night knowing that, yes, I was late for my yearly mammogram (only by a few months) and that I would call in the morning to set that up, but I was okay. Phew. And zonk.

When I called for the mammo the next morning, I found out I couldn't get in until the end of December. Well, that was okay, because everything I looked up the night before and that morning on my computer said that I didn't have anything to worry about (I never mentioned anything to the scheduling department about feeling something inside my breast. Stupid, I know. Been kicking myself for this since then.).

Thanksgiving comes and goes, and then December rolls around. I'm working diligently on a book, bound and determined to get it finished by the first of the year, if not then really soon afterward (I'm not the world's fastest writer, you know.). I'm loving it. Words are flowing. Then Christmas break hits for all three of my kids. And I was fine with that, really. I'd worked hard for a while now, and I deserved a few weeks off to enjoy the holiday with my kids, my husband, my family. Taking time off was a conscious decision.

I joined a gym. I decorated. I shopped. It had been years since I'd been in the Christmas spirit. But damn it, I was feeling it this year. It was going to be a GREAT Christmas. And it really was.

Two days after Christmas, I came home from the gym and showered. Afterward, looking in my closet for something to wear, I bent forward and... Ow. I felt a twinge in my breast. A zing. Huh. That was weird. I hadn't done another self breast exam since THAT one. So... Okay, here we go again.

My small "ridge" had grown. And changed shape. There was a hard, round lump at the end of it, toward the center of my breast. I FREAKED OUT. First call was to my doctor. Yes, I had the mammo scheduled. And yes, they'd want to see that first before I could get in to see him. But, for the love of... They had to change the order for the hospital. Turns out a diagnostic mammogram is done differently than a yearly mammogram where I go. There has to be a radiologist in attendance to read it. And of course, there wasn't going to be one when I had mine scheduled.

Fuck. (People who know me, should be able to picture me saying exactly this.)

They couldn't get me in for the diagnostic mammo until January 16th. SIXTEENTH. WTF, seriously. I called my doctor's office back, and they weren't happy with that time frame either. They had a little pull, and got the appointment moved up to the 9th (which is my middle daughter's birthday, mind you. I always get a little wiggy when bad things could potentially happen on good days, but I took the appointment anyway). The next day, I went to back to the gym, and just like the day before, I came home and showered. Only this time, when I was getting dressed, it was in front of the mirror. I looked at my reflection. Looked again. My stomach literally dropped to my toes. Right there, on my breast, was a dimple. Ladies, you and I both know this is not a good sign.

Looking back, I think I knew right then that I had breast cancer. Everyone, and I mean EVERYONE, had been telling me that it wasn't. It was a cyst. It was a fibroid. It was... whatever. Breast cancer doesn't hurt, and this hurt. So, therefore, this wasn't cancer. It just wasn't cancer.

After I saw the dimple, I called the doctor's office back. Once again, they used their pull and got me in for the mammo on January 2nd (and this whole time I'm thinking why couldn't I have just had that appointment to begin with?). New Year's Eve was spent low-key. January 1st was spent with me in private freak-out mode (I either do it private where I turn really quiet, or more openly where I can't stop my hysterical tears and near-hyperventilation breathing. The latter is more common now. Fun, huh?).

My husband went with me for the mammogram. He had to wait in the "outer" waiting room, while I changed and waited in the "inner" waiting room. Time dragged. And dragged. Waiting is so, so hard. My mind wandered, hopping back and forth from "they'll find a fibroid" to, "this is gonna be bad". Finally, the technician came and took me back to her little room. The mammogram hurt more than usual. She took eight shots of my left breast alone. Then it was back to sitting alone in the waiting room.

How these women school their features as they talk to patients, I'll never know. The technician came back to me again. Sorry, but they're going to need three more views. That "this is gonna be bad" feeling grew. I made it through the extra views without freaking out too much, and went back to the waiting room. After more waiting, I'm not sure how long, she comes back once again. This time, they want to do an ultrasound. I knew that having one might be part of all this, but shit. I really wanted that "it's a fibroid, see you next year" answer.

The ultrasound tech was quiet the entire time. Too quiet. She never said a word as she did the exam, and as she finished, all she said was for me to wait right there, she was going to show the ultrasound to the radiologist. My nerves were pulling double duty as she rushed, yes rushed, out the door. And the second the radiologist walked in to tell me she wanted to do an ultrasound herself, I lost it. I cried. A lot. In between tears, I told her "You're supposed to tell me this is nothing. NOTHING."

Well, it wasn't "nothing".

They had me get dressed, then took me into room with a computer monitor set up and brought my husband in. I'm still crying, and the look on his face as he walked in was one of WTF. "It's not good," I told him. The radiologist shows us the areas on the mammogram and the ultrasound that they were "concerned" with. Two different masses (where, when I felt it, I thought the one had just grown). Her recommendation was for me to see a breast surgeon for a biopsy. I, of course, couldn't get in to see the surgeon until the 9th. Another week of waiting, of wondering. Of pure hell.

The 9th finally arrived (remember what I said before about the 9th being my middle daughter's birthday, and how I get wiggy about receiving potentially bad news on what is supposed to be a happy day. Yeah. That.) I won't go into details about the biopsy other to say HOLY HELL. I was given the max numbing medication allowed for an in-office procedure, and it didn't come close to being enough. My husband wasn't allowed in during the procedure, which bothered me to no end. After the biopsy was done, I asked the surgeon what she thought.

"I don't like how the samples look," she told me. 

"You think it's cancer?" I asked her point-blank.

"I do," was her just-as-point-blank answer.

Well.

Again, looking back, I can't say I was surprised. Two days later, we got the pathology confirmation. Invasive Ductal Breast Cancer. Two tumors, each 5 cm apart. A week after that, we got the news that each tumor has a different makeup. Tumors can be hormone-fueled or not, and within that, they can be either estrogen or progesterone receptive. The make up of my tumors is that one tumor is ER+/PR+/HER2- (I'll tell you about HER2 in a second), and the other is ER+/PR-/HER2+.

Ah, that bitch HER2. She's an aggressive little witch. Most breast cancers, when it metastasizes, finds its way into the lymphatic system (through nodes) and spreads that way. Well, little Ms. HER2 figured out a way to bypass the lymphatic system. She can go right into the blood stream and settle in to grow pretty much anywhere she wants. The GOOD thing about HER2? There's a chemo drug that can foil her plans and kill her wherever she is. It's targeted just for her. An A-Bomb with her name all over it.

Because of my HER2 status, my doctors decided to go the chemotherapy route first (zap it, and zap it NOW) and do surgery after (I'll be having a single mastectomy). My first treatment was exactly 2 months ago today. 1/31/12. I was terrified. Still am, a lot of the time. Chemo sucks, quite frankly, but I'll talk more about that some other time. Right now, I just wanted to get the ball (or blog) rolling and tell you a little (or a lot as it turns out) about my story.

I want to sum up my introduction by saying (and hopefully not sounding preachy): Don't ignore your breasts, ladies (and gents). Don't ignore you gut feelings. PLEASE ignore most of what's on the internet. Talk to your doctor. Find only reputable websites, if you have to do searches at all. Cling to those close to you. Lean on them. Make them lean back on you. Love them, listen to them and most importantly, hug and kiss them everyday.

I'm going to scoot and get rested up to go out to dinner with friends tonight. I get while the gettin' is good, but I can tire pretty quickly now. I"ll keep posting about my... journey, experience, anyone? Bueller?... and I'd love to hear any comments.

Til next time,

Kristin