3rd Round Is Going Down

I cannot believe the overwhelming response I received after posting my last blog--"Taking Off The Hat."

I have blown my previous blog stat-record out of the water. With more than 4,200 views in 24 hours, which was incredible, it was honestly the comments, the shares, and your thoughts, encouragement and prayers that truly made that day (and post)  remarkable.

I started this blog because I love to write and make people laugh and smile. I wanted something to share with everyone.

I've always believed that everyone has a story to tell.

Then, I got leukemia, and my "story" took an unexpected plot twist I wasn't ready to handle. I honestly wasn't sure how I would continue this blog or how much I wanted to share about this experience. But for those who know me personally know that I am an open book. I speak my mind. I'm an over-sharer. It's who I am.

I figured I would share some of my story eventually, but finally posting a photo of me with no hair was truly difficult.

I was afraid of a lot of things--how people would react, letting people see me at my most vulnerable state of my life, sharing a photo of the worst I've ever looked (though I look worse now that I've lost most of eyelashes on one eye). And there is no Instagram filter for baldness.

It was truly terrifying letting people see that side of me. I was opening myself up to friends and to complete strangers. I don't know how I got the balls to do it. Maybe I took Klay's... who knows?

But after posting the photo, I've finally reached the "I don't give a shit" attitude I've been waiting for for months.

I honestly don't know if I was going to ever be ready to post something like that--I don't know if I was even ready to that day--but finally sharing it with all of you took a lot of pressure off of my shoulders.

I could breathe.

I have no hair. It's part of who I am at this part of my life. I needed to try to embrace it.

So what if I look like shit without hair? Who cares if I don't have make up on? I'm just over it. Yes, make up helps me look better (and hair too), but this probably isn't the worst I'm ever going to look. I'm anticipating looking worse after my stem cell transplant. And I figure having cancer is a pretty good reason to look bad.

I'll start to look better... eventually.

It doesn't mean I won't ever struggle again with being bald. I just have to face facts.

There will be days I'm going to look and feel terrible and days that will be a piece of cake. I just have to take it one day at a time and accept that bald woman with no lashes in the mirror and remember she is a fighter and someone who is going to stumble and fall, but ultimately she will get back up again.

So, here I am, today on February 17--three months after my diagnosis--in the waiting area of the hospital doing what people do in the waiting area... waiting.

I'm being admitted for my third round of chemo today.

The worst part about this all is leaving my boys. I know that it's not going to be as difficult as it will be when I have the stem cell transplant in a month or two. I'll be in the hospital for three weeks then--three weeks I'll never get back with my kids.

The thought of that makes me want to puke.

They did say they were going to try to make an exception for me and my situation, so the boys could come visit a few times a week, but that's not enough. Poor Brody didn't want mommy to go today. He told me to stay home with him. And all I want to do is sniff my sweet Bex. Oh, you think that's weird? Who doesn't love baby smell?

That's the part of this that is extremely tough; I hate how this effects my boys.

It sucks.

OFF TOPIC CAUSE I'M ABOUT TO GO ALL BALLS TO THE WALL CRAY CRAY... I absolutely hate how long it takes hospitals to get something going. My room was supposed to be cleaned over two hours ago (and it's now 3:30).

I thought if they aren't ready for me, maybe they will let me go to the infusion room and the chemo started. Well, apparently, the infusion room is full today. Seriously?I've been into the infusion room like 5 or 6 times and it's never even been close to being full. I don't get it. Why isn't there an express line for chemo patients? Or a season pass to the hospital so I don't have to sit and wait and I can skip to the front of the line like you can with a Six Flags Fast Pass? I mean that would be genius. I'd pay for that.

The sooner I start, the sooner I leave this joint.

Hospitals infuriate me.

I want to scream.

I can't believe how long this takes.

I'm now in my room (which I didn't get to til 5:20 and I won't start chemo until about 10 o'clock tonight; I've been here since 1 pm. Good thing is my favorite nurse is here tonight with me and she makes things better. But in the mean time...

I guess I just need to remember if Britney Spears can make it through 2007, I can make it through this week.

And if I go crazy, I'll have to do something more drastic than shaving my head since I've already got that part covered (but not literally). Ya get it? My head isn't covered... nevermind... the crazy-chemo-patient-train has already left the building...

Bald & Bitchy,



Don't forget! If you enjoy reading my blog, please follow and subscribe my going to my website (and you have to be out of the mobile version to do so; click view full site).

Stay up to date with the latest. I have some interesting blog posts coming up. I'll be revealing--well, stuff.

Taking Off The Hat

Being bald is still a bit of a challenge for me.

I used to walk by the mirror and didn't recognize the person there.
Now, I walk by a photo of me with hair and I don't remember being "her."

I want to be "her" again.
I don't know if I will ever be.

I mean look at her.

Yeah she's pregnant and fat, but whatever. She seems confident--even though she needs her roots done.

I'm not her any more. I'm not that girl with that giant smile and long blonde hair.

I feel like in so many ways that defined me; it was who I was--the blonde girl. Now, I don't have that security blanket to hide under.

I'm bald. Like bald bald.

Everyone who has seen the hairless version of me says "at least you have a nice shaped head." But I'm pretty sure people say that to anyone who has cancer and has to shave their head. At least, I feel like it's that way.

And not that people saying that upsets me; it doesn't. It just feels like they need something to say when they see my bare head.

But what are you supposed to say to someone who lost their hair from chemo?

I suppose there is no right or great thing to say. Whatever anyone says, I won't believe them.

And it's not just that. I look at this guy down here and he's freaking handsome.

I know he loves me no matter what.
He's loved me when I've been fat, skinny, had acne, cellulite, stretch marks, double chins and now with no hair. But being bald does something to a woman's confidence. I feel ugly. And way too ugly for him.

And I've debated on how/if/when I wanted to share my hairless head with the world. I don't know when I'll be ready. I don't know if I'll ever be ready. I don't know what I'm scared of or why I've hesitated showing my head to people. But I'm tired of hiding it.

However, when I take a picture or see a photo with my bald head in the background it's depressing. It's shocking. It's not me.

It was so difficult those first few weeks. It was especially tough when I came home from my 34-day stint in the hospital.

I'll never forget my first night home.

Bex was still in the hospital. I was obviously upset about that, but being at home--where I haven't been since my diagnosis--was strange.

I was so happy to leave the hospital and finally enjoy home-life again but I didn't expect to be so down and depressed once I got there.

Walking in MY bathroom, in MY house, with MY things, and looking in MY mirror was one of the hardest things I've had to do.

I guess it was because I hadn't been in the one place that is OURS and that is familiar since my life was turned upside down. And now I've come home looking pale, frail, skinny, hairless, and sick and it's all more real.

As odd as this sounds, it still seems like a shock, almost dreamlike, but it also feels more real... if that makes any sense. I guess it all sunk in more when I was home.

I wasn't living in the hospital fighting this disease any more.

I was at my home, in my environment, with this disease--with cancer--trying to get back to a normal routine. And now, I'm going to feel all of the emotions that really come with it.

I deeply felt the depression that accompanies cancer.

I was coming to the realization that it's going to be a long road before it's "over" and knowing that it's never really going to go away. For the rest of my life, I will have to have check ups, check the box for "cancer" on medical forms, inform doctors I've had chemo and worry about the effects it may have on body longterm. It's possible I can develop more cancers, especially now that I've had chemo.

All of these things were weighing on my mind daily. Plus I would cry every time I looked in the mirror at the bald girl who stared back at me.

Knowing that this won't go away and knowing that I had to go back in the hospital eventually, I sat in my bathtub for the first time in almost 40 days, I just stared at the faucet with tears streaming down my face.

I'm home.
I don't want to go back and deal with this.
I just want to be home.
I don't want to go to the doctor.
I don't want to know when my next round of chemo is.
I don't want any of it.
I want to hide from it.
I want to avoid it all.

For days after coming home from the hospital, I couldn't snap out of it. I cried every day, at different times of the day.

You'd think I'd be ecstatic to be home, and in a way I was, but I could never get away from thinking about the fact that I was going to have to go back to the hospital.
I was going to have to get more chemo.
I was going to have to do it all again and again and again.
I was going to have to fight to get through this.

And I was still getting used the hairless version of me.

Now, with Christmas around the corner, I was going to see more people I knew. And, eventually I would want to take off my hat to scratch my head.

But once I got comfortable enough, I'd take my hat off and watch people's faces react to the shock of seeing "bald Cass."

I mean it's shocking, of course, to see me bald, especially to those who knew me pre-cancer.

Seeing someone without hair for the first time is going to be strange. But everyone who has seen me with no hair has been great about it.

I just worry about kids who I may be around eventually. That worries me.

And I do feel like if I go somewhere people stare like they know I have cancer... maybe it's just me thinking they stare.

I don't know why I care so much about something so dumb. I'm alive right? So who cares if I have hair or not?

I feel like that's how I should feel.

I feel like I'll never feel like I look good again. Now, I think my eyelashes are starting to fall out and it's getting harder to put on mascara. They all just clump together and I have to work with my lashes for a long time to get them decent.

Thank God I have blonde eyebrows. Klay and I have always made fun of each other's eyebrows. His are huge, dark and bushy and he says I don't have any cause you can't see them. Good thing is, if they go away I won't look much different.

I guess there are good things and bad things that come with losing your hair.

BAD: One of the tough things to figure out is where to stop your makeup with no "official" hairline. Should I bronze my head because it's pale? Ehh... maybe that's too much.

GOOD: But it's great to not have to dry, straighten or fix my hair. It's cut down my time to get ready by 40 minutes or more.

BAD: - My head gets cold if it's too windy or even cool in the house with the fan on.

GOOD: I'll save money on shampoo and hair products.

BAD: It sucks having a hat on all day, especially when I'm in public, cause it gets hot and itchy.

GOOD: I'm not necessarily worried about it raining and having a bad hair day due to weather. SCORE!

BAD: I'd get people staring if I went without a hat.

GOOD: I take much quicker showers. I'm more like a man in that way now.

BAD: I have a huge mole on the back of my head that I just learned about two weeks ago. Apparently no one told me about it. Klay said "he thought I knew." I guess he thought I had eyes in the back of my head. Who knows?

GOOD: Maybe when it grows back I'll have hair like Jennifer Aniston or a Victoria's Secret model. That'd be sweet.

BAD: Or it could grow back frizzy, crazy or look like Don King.

GOOD: Oh! And maybe I won't have a cow lick in the front of my head where I can do a center hair-part. That'd be amaze!

In a lot of ways, I don't want to mess with hair again. It takes up a lot of time. But I see cute hairstyles and stuff on Pinterest and think "oh I'd love to try that..." and then I remember I'm bald.

Unfortunately, I still grow leg hair.

Seriously, chemo? You suck.

So I guess it's time for me to not give a shit.

I have leukemia.

I don't have any hair.

Whatever.

I'm bald.

I'm different.

It's life and it's part of my journey.

Now, I just look more like my boys.

No hair... don't care,

I'm having a stem cell transplant

I know it's been a long long while since I blogged.

A lot has happened since December 16.

- I got out of the hospital the next day.

- Christmas.

- Beckham came home on New Year's Eve.

- Found out I will have to have a stem cell transplant.

- I went in for my second round of chemo on Jan. 12.

- My sister was typed to find out if she is a match for the transplant.

- I got out of the hospital on January 16th.

- The next day, I attended a benefit softball tournament in my honor.

- And then had to go to the doctor for repeated labs to check blood work over the past few weeks.

- Found out my sister is a complete mismatch, so they are searching for donors on the registry.

- And had a few doctor appointments for Bex too.

Needless to say, I could write a book on all that's happened between now and then.

It's difficult for me to figure out where to start or what exactly everyone would be interested to hear.

Life Lately

I feel like life has been so busy and chaotic lately.

I don't remember what life was like before I had cancer.

Most of my days are spent going to the hospital and having doctor visits, getting poked in my arm to find out if I need to get platelets or blood. It's literally consumed my life.

And let's just say that everything at a hospital takes hours. My appointment may be at 9:30 am, but after getting blood or platelets I may not leave until 5 or 6 at night. It's exhausting. And I've literally been having to go two to three times a week.

This week though, I've gotten a break. I went Monday and my counts are starting to recover from my second round of chemo and they were looking good enough that I will go back next Monday. It's like a mini vacay from the hospital. Whoop whoop.

When I'm not at the hospital, I've been at home taking care of my boys. I spend my days changing diapers, feeding and washing bottles, doing laundry and playing with Brody and Bex.

When my counts started to drop about Jan. 19-20, I started to feel more tired and run down. No nausea or vomiting, but I got another cold or sinus infection or something. I'm still battling that but I feel better.

I am very anemic so every time I get up to go to the bathroom or pick up stuff or vaccuum, I get really tired and I've even gotten lightheaded. Luckily, I've had a couple of friends help me out a day or two during the day while Klay's working.

My awesome friend Lauren has went to every doctor appointment with me the last three weeks, so Klay could go to work and school. She has literally been over to keep me company on days I'm by myself, helped me take care of the kids and just sat with me at the doctor for hours and hours. She's truly the best!! Thank you Lauren! I love you!

And at night, Klay has made me sleep in when Beckham would wake up, so I could rest.

The thing is I'm extremely desperate to get up with that little guy. Having a baby is so different the second time around. I am much more calm and patient. I don't mind waking up in the middle of the night to feed him. In fact, I enjoy it. I just sit and stare at him, soaking up every ounce of this sweet baby boy. I love the baby phase. I was ready for it this time. I know to enjoy it all because they grow up so fast. I love him being nestled in my chest. I love his smell. I love watching him grin. He loves to smile. So I find myself not so eager to get back to bed. Waking up with him is my quiet time with him. During the day, Brody is so loud and playful, which is great, but it takes a lot of my attention away from Bex. I feel it's so important I spend alone time with both of them, individually. And I adore my quiet snuggle time with Beckham, even if it's at 3 in the morning.

But Beckham is doing great. He's been amazing. He's really a great baby. He's happy and healthy.

And Bro is absolutely loving being a big brother. He's so sweet to him and wants to "pet" him all the time. If he cries, Brody tells me to "get up and feed my baby brudder."

I just love my boys.

My 2nd Round of Chemo

I made it through my second round of chemo this January. I spent 4 and a half days in the hospital, receiving Cytarabine and Idarubicin again. I did have some stomach issues the first day, but after that I was OK. I began my Nexavar--the oral chemo pills--and I continue to take those for 28 days. I did get a rash on my neck, face and legs this time around. It didn't itch; it just looked bad.

This round I did my treatment at another hospital--Medical City Dallas. The room was bigger and had wallpaper, but was looked like a 1990s nursing home. I suppose that's better than the plain white walls that surrounded me at Presby. You'd think they'd make the oncology floor have nicer and have more uplifting rooms. Someone needs to call Nate Berkus, stat!

Unfortunately the nurses had a really, really difficult time accessing my port. For those of you who don't know what that means, I have a port in my chest where they "stab" me with needles and leave it in (like an IV) where they can give me the chemo, draw blood and give me other medications, which keeps them from having to poke me in the arm several times. But the thing is, depending on who does it, it hurts like hell when they push that needle in my chest. And I have two ports, which means I can have them both accessed at the same time (it basically doubles the stabbing, if they want to access both).

Needless to say, it took them 14 times before they got in one port--14. It hurt and was uncomfortable, but I wanted them to get it done so I could start chemo and get out of there ASAP later in the week. Fourteen times is pretty much unheard of... it was crazy and I had quite a few pokes in my chest from their attempts. At Presby, it took about 5 or 6 times at the most, but just about every time people tried to reaccess my port, they had difficulty.

However, since I've been discharged, I've had to go get blood and platelets in the outpatient infusion room several times. The nurses accessed my port on several occasions and got it the first try. Though, now, I give them a little guidance on where to go which helps.

Besides that, I really liked most my nurses. They were amazing, which made my experience much more enjoyable. They were super sweet and I just loved having their support. There was one nurse that I really connected with. She was my fave. I feel like I found another soul sister.

Stem Cell Transplant

It's going to happen; I'm going to have a stem cell transplant.

What the hell does that mean exactly? Ehh, I'm still learning. But I'll try to explain the best to my understanding.

AML is a blood cancer. Bone marrow generates and spits out my red and white blood cells and platelets. I will have another round of chemo when I'm admitted for the transplant to wipe out my immune system. Once my counts are bottomed out and I have no immune system, they will infuse the donor's stem cells through my port and I will essentially generate their immune system, which is healthy and not producing leukemia cells.

I will be in the hospital for at least three weeks, which blows.

I will be super prone to getting infections so it's important they monitor me. Normally, they don't allow children on the transplant floor since many of their patients are neutropenic. They did say, however, that they would likely make an exception for me, as long as none of my kids are sick.

That took some stress off of me. I mean I couldn't imagine not seeing my kids for three weeks, especially Bex. He's going to change so much in three weeks and those three weeks I'll never get back. At least with Brody I could Facetime or something and talk to him and he can talk back. But it'd be just as tough going without seeing and spending time with him too cause he knows mommy is gone and in the hospital. I'm not sure how he's going to handle that a second time. That's a long time for a toddler. Hell, it's a long time for me. I'm dreading it. I hate being away from them. I hate being connected to a pump I have to wheel around like a ball and chain. I hate being away from the dogs, away from my bed, my shower, my home. All of it sucks. I hate chemo. I hate the hospital.

But I know I have to do this to get better.

Unfortunately, as far as the donor goes, we were hoping my sister would be a match. It's most likely that siblings will be a match because we are made up of the same genes. But she was a complete mismatch. She was extremely upset. I was OK. But I can't imagine how she feels. I'd feel horrible if she were in my shoes and I got that news too. I know she wanted to help me and she felt like that was her chance to really help. But it's not her fault she's not a match. I don't want her to think that it is either.

On the bright side though, the docs seem to think I'll find a match pretty easy. The preliminary results look "great," they said. And that's all I can hope for I suppose.

Having a transplant is necessary in my case. I have resilient mutation called the FLT 3 and it's a bitch. It just comes back and comes back which means that without a transplant my chances for longterm remission are slim with just chemo. So, a transplant about triples my chances for longterm remission.

The recovery time for a stem cell transplant... is six months to a year or more. 

I think that means my immune system will pretty much suck for a long time and I'll be tired and prone to getting infections. Getting an infection can land me in the hospital, so we don't want that. There is something also called GVHD that I could get. Just look it up. It's kinda hard for me to explain.

Pretty much the stem cell transplant is overwhelming at this point.  When it gets closer, we will take a class on it to learn more.

They are thinking it will be March or early April. Until then, I don't want to think too much about it and the recovery time. It's overwhelming.

Until next time,