Day Three: Nausea and Twitchy Legs!

Looks like chemo isn't being too kind to me. I was able to sleep all night and woke up feeling really good!

And then not shortly after that famous nausea kicked in. Woooohoooo. Been waiting for that to hit me hard and it did today. They pumped me full of some stomach meds and I started feeling better.

Until the weirdest side effect kicked in: twitchy, twitchy legs. How does that happen? Never heard of such a thing. That was mostly caused by one of the anti-nausea meds. It was the weirdest thing ever. Restless legs is the suckiest feeling, I hate it.

Then the side effect train is wrapped up by extreme fatigue which is what I'm battling now as I write this blog post.

Looks like this chemo session might not have too many fancy swords pictures. Bummer.

So I'm going to include a picture from the day we went to the Children's Hospital. I went on in a previous post about how I did want one last day to enjoy my hair and I did get it.

Adrian spent the day taking good care of his momma. Covering me up with tons of blankets and bossing the nurses around. He's such an awesome kid.

So again kids, short blog post. This might become a trend for the days I'm getting the actual chemo and I'll have to catch up on my awesome ones when I'm free!

Thank goodness I did all my homework for the week before chemo started!

I'll keep ya you all posted but so far things are plugging along.

Day Two: Insomnia

Sorry kids, we're going to have another short little blog post today. I don't know if it's the chemo, the steroids, or the hormone changes but I literally did NOT sleep a wink last night.

Everything else is going smooth but I'm super wiped out today. No pain but just super tired. Getting my treatments done at Two Rivers is great because now Adrian can come hang out with me during treatment all the time! Which is the best medicine ever. 

Nothing better than an icecream party! My kid makes the best faces. At least the hospital has good iceream. This chemo round feels a bit more rough on me this time around but maybe that's the zero sleep I had. I hope things will look up tomorrow. I did get to explore the hospital and was happy to see I have more room to roam. 

This is the pretty chapel room. Again, not religious but it's a great place with an awesome view to sit in. Adrian has fun running all over the place and all the nurses think he's down right adorable.

Duh, of course he is. 

Now I'm going to spend the rest of the day resting and hoping that I get some sleep tonight. Tomorrow I should have some fun chemo shenanigans to share. 

Loving all the support I'm getting from everybody- thank you all so much from the bottom of my heart. Especially everyone at UW-Manitowoc right now- seriously, thank you all. <3

Day One: Rocky start but smooth sailing now

Day one of chemotherapy went off to a rocky start. Unfortunately had to deal with a super grumpy nurse. This is how I feel about grumpy nurses:

I'll match your grumpy all the way.

I'll spare the details but it was not a pleasant experience. One thing I'm learning as I go along this process: this is YOUR body and YOU call the shots. Don't let anyone push you around or let yourself be intimidated. You are your ultimate decision maker.

But that's all over and dealt with so I'm just enjoying some TV and my awesome lake view. All the nurses I have now are super sweet. I tried to spice up my chemo space and think I succeeded. It looks very chic around here. I need pleasant scenery while I'm having all this poison injected into my chest veins.

Duh

Varying levels of encouragement

 

This is my Adrian inspiration. 

So the area is looking way better than it did before. It's nice to have some pretty things around to keep the spirits up. I mentioned in the previous post how much that helped and it really does add some spirit to the room.

So far the chemotherapy is going well. No allergic reaction to the first drug (Rituxan) like I had the first time so that's pretty sweet. Just feeling very tired but that's probably because they doped me up with Benadryl just in case and hooked me up with a massage. The Rituxan is a jerk- it's the one that causes a lot of the tummy side effects. But it's telling the tumor cells to stop growing so we still like it.

Isn't my view awesome?

That is a gorgeous view. A small bonus. I'm bored already so I hope the rest of the day goes smoother. I might have to go do some laps with my IV thing. But I am loving being closer to home. The hospital isn't as nice as Baycare and doesn't have as many plush perks but it'll do. It's worth it so I can see this little face multiple times throughout the day: 

So far, so good. I'll keep everyone posted. I'm going to try to rest now and take a nice nap! Chemo makes me sleepy.

Back to the chemo party tomorrow!

Well, go figure. The day I start feeling like myself again and it's time to go back to chemotherapy.

One of the ladies at the cancer clinic said that's pretty typical.

That's making me dread the process even more. I feel like today is my last good day and then I'm subjected to at least another eleven days of feeling like crap. 

But that's how we kill the cancer. Have to keep reminding myself that. I was having some random paranoid thoughts last night (the whole "what if I'm going to be the scary 3% and not survive" type) and I told my doctor about it. Dr. Saphner being the awesome guy he is said that we can do a chest x-ray after this chemotherapy to see how much the tumor has shrank to help reassure me. YES. DIE TUMOR DIE. 

So that's sweet. Honestly I wish we could do an x-ray every time to see that baby dying but blah, blah radiation. But anyways, that's cool and I feel loads better. Having an awesome doctor through this process is really key.

But the new side effect we have isssss... (drumroll):

Horrible scalp pain.

See when my hair started falling out we buzzed it. Well, I had no idea your hair follicles would be so angry. I was in huge amounts of pain the past few days until today I finally couldn't take it and I had my mom shave my head. So now I really have an egg. The left over hair being yanked around by caps, scarves, or my wig was horribly painful. To the point of tears painful. Imagine someone poking you with tiny, tiny cactus needles on the top of your head. It was kinda like that. 

But ohhhhh, happy hair follicles. Now I can wear my wig with no pain!!! I mean, it still hurts a little but not all bad. 

Yaaaay for my beautiful wig! I feel like a normal person again! It's amazing how much hair is tied to our identity. It really is. Every time I've gone anywhere in my scarf I've had this whole underlining 'ugh, I'm bald' feeling. And it doesn't help that my scarves (no matter how gorgeous) mark me out as someone with cancer. I am beyond ecstatic to have my head feeling more normal to wear a wig. And plus it's way warmer. Wisconsin winter is not the place to be sportin' a bald head.

But I'm not going to bother with it at chemo. No point at all- that's the one place that my bald head is really part of the norm so I'll just sport my caps and scarves.

I'll keep you all updated during the chemo process this week. They are turning up the dosage so I'm curious and apprehensive to see how this impacts me this time around. Each chemotherapy session they will increase the dosage until I can't handle it anymore. That's literally the words they said. Nope, not intimidated at all... 

It's hard to be filled with witty comments the night before. To be honest, I'm just filled with dread. I finally feel normal and now I get to feel like crap all over again.

Gotta be strong though. And what's my main source of strength? 

This little guy right here. How can you not stay strong when you have this beautiful face looking up to you? I hate how this is putting a darkness on his childhood. One of my biggest priorities has always been making sure he has the most enriching and wonderful childhood I can give him. But this is teaching him strength and adversity when faced with an obstacle. And that's crucial. I hope he looks back on this and remembers how strong his momma was. Or he won't remember much except my egg head. Which is fine too. 

I can be strong for him. <3

Free Stuff For Cancer Patients! Sharing some resources!

In my post yesterday I mentioned that huge statistic.

The one where one in two men will get cancer. One in three women.

I've become aware this week at how many readers my blog has generated.

Now with statistics like that there's a good chance a fellow survivor (my self help books designate you as a survivor the instant you are diagnosed) will stumble upon this blog.

Or that one of you readers know someone (other than me) that has cancer.

Or will know someone that has cancer.

So on that note, I think it's super helpful to include all the wonderful things I have come across or I have been told about. We call these cancer perks. Cancer encouragement. Cancer freebies.

Utilize these. Enjoy them. We have to get something out of this rotten deal, right?

Your List of Awesome Cancer Perks

1. The Look Good Feel Better class hosted by the American Cancer Society.

This class was the best. I got a giant bag of designer makeup and a free wig. The ladies were super nice and I got to meet some other lovely ladies. Seriously, it's probably the best perk I've been offered so far. I look forward to doing my makeup every day now! Which is especially a perk now that my hair has taken an exit.

2. The Chemo Angel support network.

This is more a moral support and encouragement thing. I just signed up so I don't have a whole lot of insight yet on it. But it sounds great. Basically you are hooked up with a Chemo Angel and they send you little things in the mail to help keep your spirits up during treatment.

3. The Lydia Project

This organization will send you a tote bag filled with encouragement items and you can sign up for support notifications (similar to the Chemo Angel site) to receive while you go through treatment. The tote bag looks pretty cool so I'm excited to see what it's in it when it comes. 

4. Clean For A Reason

Now this is pretty sweet. This site checks to see if any cleaning companies in your area are partnered with them. If they are: you get a free cleaning service for part of your treatment! Woohoo! But sadly, the small little town of Manitowoc does not have anyone that participates in this. So no free maid for me. But maybe for you! So check!

5. Heavenly Hats

This foundation sends you a collection of free hats! You get to tell them what type of hats you are diggin' (baseball hat, beanie, ugly knit hat, silky hat, whatever) and they will send you some brand new hats. And they're based out of Wisconsin so that's neat.

6. Good Wishes Scarves

I am STOKED about this one and I will be haunting my mail waiting for this to come. The scarves on this website are gorgeous and you get one free scarf to cover that little egg of yours. And they are actually CUTE. I will have to post a picture of mine when it comes.

7. Free Hats for Chemo Patients

While this website is aimed at people with breast cancer- these hats are for any lady undergoing chemotherapy. And they're pretty funny. Baseball hats with a bald chick on them- what could be better? 

So here's a good start. There's plenty more out there. Breast cancer patients seem to get the best hookup which is fair. If you or someone you know gets diagnosed with breast cancer give 'breast cancer freebies' a Google and you will find TONS of awesome free stuff. 

These are mostly free things you get in the mail. I didn't even include all the financial/insurance assistance and travel help that is out there. Here's a nifty little page that lists some various ones. 

Just Google the crap out of free cancer stuff.

Get yourself some freebies, we deserve it.

Because believe me- I'd rather have my hair than a free scarf. 

But I do think Grumpy Cat is pulling off the scarf look quite nicely. 

Navigating a world that is scared of cancer.

So in today's post I'm going to be all over the place.

First off, the baldness is going okay. I mean, I wouldn't say it's great but it's okay.

It's really not as bad as I thought it would be. I really don't care as much as I thought I would. The main things I've noticed is how cold my head gets. But I'm really enjoying the scarf/turban look I did yesterday and today.

Very fashionista. The cancer clinic was raving about it today.

Oooo la la! I still feel pretty! It's all about the accessories. Big giant earrings to give your head some busy work to distract from your flat little egg top. For some reason bald heads and eggs have a strong correlation for me. I wrote a really, really outrageous poem about it that I will not be sharing on here. When my chapbook is done I'll share it. I'm writing it on this whole experience because hey, cancer is great writing material. Maybe this will get me published. You never know! So when the chapbook is done, I'll share it on here. I might be brave enough by then to share my poetry with you all.

Speaking of you fabulous readers, I'm getting an average of a 100 page views a day! A day! Oh my goodness. I have a real audience. I'll try to keep my cool without resorting to fangirl like screaming. Seriously, love you readers. Keep reading and I'll keep writing. Now the pressure is really on to not make a typo or misspell something. 

Of course if I do, I have freakin' cancer people. I'll make all the typos I want.

Haha cancer card.

Speaking of the cancer clinic, things went well today. They didn't have to access my port to draw blood- they just pricked my finger. That made my DAY. I'm very picky about who pokes my port. Giggity.

Sorry, no more dirty jokes. For about five minutes.

Yes, doctor's appointment went good. My oncologist is my homeboy. He's wonderful. He crafted a game plan so we can put some extra days between one of my chemo sessions that happens to end two days before commencement. 

Yeah, that sucks. I'd like to graduate and get my degree without throwing up on someone or fainting on stage. (You all realize I'll still go no matter how sick I am so this is a real possibility)

So his game plan is to move our dates by one day here and there to change the spacing. So instead of having only two days to get back to normal I could hopefully have a week. 

That's fabulous. So I go back to chemotherapy on Thursday now, one day early. Oh yaaaay............

I wonder if they'll have that basket full of soft and silky ugly hats there. The uglier the hat, the happier the hair follicle.

I told you I was all over the place.

Ah yes, my scalp. That shit hurts. My hair follicles are angry. In my head I envision them looking like this: 

That's kind of how I imagine a hair follicle looking. Seems about right to me. It's like a skinny pickle alien.

Most of the pain is because I have some stubble left so putting on caps, scarves, and wigs pulls on them which angers the hair follicles.

They're so pissed off.

So once they fall out (hopefully soon!) it will feel better. Or so they tell me. 

That's why I haven't put on the wig yet- the wig cap makes my scalp feel like that angry pickle pictured above.

Is that a pickle?

Let's get back on track here. 

One thing I want to address is the elephant.

That giant elephant.

We've seen this depicted in movies and television when we talk about cancer. Heck, every movie I mentioned in that earlier post about the lack of baldness in cinema each talk about this. Almost always the cancer patient gets dumped. A loved one cannot deal and won't talk to them. A friend avoids them. And so on. 

Some people cannot deal with cancer.

Before my diagnosis, I could understand this a lot more. Some people hear cancer and they run for the hills. Their minds cannot process this horrible disease impacting someone in their lives. They don't know what to say. They don't know how to deal. They're overwhelmed.

Maybe it's my mood swings (yaaaay menopause is coming!) but this angers me now. I'm trying to bring my empathy back to the level but it's hard. I'm the one with the disease and they're overwhelmed? But it's true- people do get overwhelmed and cannot process this.

Sadly, I've run into this. Anyone with cancer probably will at some point. It's unfortunate. 

I've noticed this even in public as I've gone out around town with my head scarf today. The staring, oh my, the staring! The outright gawking and pointing in the restaurant at lunch was about the worst I've seen so far. Ruuuude!

The young cashier at the checkout at the grocery store looked terrified of me last night. Honey, I'm not going to wig out (see what I did there?) like the girl from the Exorcist and throw up everywhere. Or keel over on the conveyor belt. 

Oh well. You get used to it I'm guessing. But it sucks.

Because it leaves you with this feeling that your disease defines you. That you are a big lump of cancer.

People. Having cancer doesn't make you cancer. I am still the same person. I laugh at the same jokes. I use the same inappropriate sarcasm. I am still me. 

I'm not going to lie and say it doesn't hurt to see people pull away that can't deal with this. 

Did you know that 1 in 2 men will get cancer? 1 in 3 women will follow suit. Don't believe me? Fact check me, fool. Those are some friggen huge statistics. HUGE. 

I feel that cancer has this scary stigma attached to it aside from it's own scary reality. This is perpetuated by television. And movies. Cancer is scary. It's horrible. It's one of the worst things in the world. BUT people beat it every day. Survival rates for many types are in the 90 percentiles. 

Like mine.

So here's my public service announcement: I am still me. I am the same person I ever was. My head is just a little more shiny.

On the opposite side of the rainbow, we have the people that shine in a crisis.

That step forward to take care of you, to be your rock, to be your support.

To buy you an electric blanket because you said you were cold.

To bring you twinkling fairy lights to brighten up your living room.

To come clean your cat's litter box because the doctor says you can't. 

To bring you a customized Cancer Slaying sword to chemo.

To drive all the way from Milwaukee for moral support.

To buzz your head because you're too scared to. 

To help you craft the perfect mohawk.

To call you every day just to check in. 

To be a rock to lean on across the miles.

To donate money to ensure your family's financial survival.

To drive all the way to chemo to play board games with you.

To make you beautiful cards in 4K with giant hearts on them. <3

I could go on and on and on. There's so much more.

For every person that can't deal with your cancer, that won't talk to you, that can't face it: there are five times as many that are transformed into friggen heroes by it.

And these are the people that often get forgotten at the sidelines. 

Cancer sucks. It really, really, really sucks. But it brings out the most beautiful actions out of the wonderful people in your lives. 

So focus on that. Not on the people that can't face you.

Because really, it's not you they can't face. It's the cancer.

And I am not my cancer. 

On that note, I have a pound of Girl Scout cookies to eat. Because I'm the only cancer patient (actually, not really it's quite common) to gain weight instead of lose weight. 

Stretchy pants for the win!

Shave time!!!

Today was the big day.

We had ourselves a little hair party/shave fest.

Well, I wouldn't say it was a party because there was no taco dip.

Why wasn't there taco dip?

But we did have blue and pink hair dye. So that's pretty awesome.

I really, really wanted to do a mohawk before the final shave. I found that was extremely necessary.

And that made a huge difference in how I handled this emotionally.

It was easier to laugh off this horrible situation by using goofy hair styles as a coping mechanism. 

Because mohawks are just awesome. 

So yeah that's probably the coolest I ever looked. 

This has been a hard journey to get to this point. From the moment I found out I was going to lose my hair my self esteem has been severely shaken. But I can't let this define me. I am not my hair. I am a kickass person. And it doesn't matter if I have hair or not.

Honestly, I'm relieved that it's done and over with. Now I can play with scarves, hats, and wigs. I can just accept it and move on. No more hair, it's all done. The moment it started falling out I was on a constant edge of my seat just waiting to see a bald spot. Just waiting to touch my hair and see strands coming out on my fingers.

Even though it was a difficult moment it was like releasing a breath I've been holding. 

So it's over. The baldness is here and that's just okay. I've got lots of creative ways to deal with it. I'm not going to lie- I'm a bit freaked out. I don't want to look at my head in the mirror if it's not covered up. But that will come with time. It will take time to deal with this and adjust. 

So here are the pictures from our hair shaving/dying/mohawk party!

One half of the mohawk done!

Mohawk painting!

Cotton candy mohwak!

Brenda, my sister-in-law, helping style my awesome mohawk

Hardcore!

And... the baldness. That's my wonderful brother, Rodger.

Yeah so the mohawk was fun. I'm so happy we did that because it did wonders for making a bad situation into something fun. I look rather badass with a mohawk- that might have to be a new look for me. I don't think it matches my minivan though!

So in preparation for my baldness, I spent all morning working on my scarf tying skills. And I must say there are tons of different ways to make scarves look like really pretty hair.

I think this design is my favorite so far: 

Now that looks pretty sweet. It will do. I found an awesome website with tons of different scarf tying ideas. The instructions for this style and many others are here. It's a great website with plenty of possibilities. So it's a good alternative for days when I don't feel like putting on a wig.

So the time has come. And I'm alive. I'm breathing. I didn't start on fire.

I still have my power. My hair might have been falling out from the chemotherapy but I ultimately made the decision to be bald. To call for the clippers and go straight to that stage.

And I am still a wonderful mother, a compassionate friend, a passionate writer, an empathetic soul, and my literary mind is the same as it ever was. My bald head has nothing to do with any of that.

It will be okay. It's just hair.