Keeping me on my toes

Just when you think you have figured out all the side effects and a plan for how things are going to go…BAM! It hits you like a ton of bricks.  Cancer and chemotherapy definitely keep you on your toes.  Nothing is ever the same week to week.  There’s always something new to figure out and deal with.  My body is constantly at war with itself and is so damn confused on what its supposed to do.  Sorry body, I haven’t totally figured this one out either.

I do continue to be amazed by how “in tune” I am with my body though.  I know when somethings wrong.  Every.  Single.  Time.  I mean I have been sick longer than I’ve been healthy so I guess I SHOULD have it figured out by now, but with every new experience comes new symptoms.  I went for my “nadir” today which is blood work 7-10 days after chemo.  They are looking at my ANC, WBC’s, and liver enzymes.  I was 100% sure the numbers would be off.  And guess what…they are.  I have been feeling extra tired and just “bleh”.  (That’s my scientific term for really crappy). I should get a sticker.  My ANC is 1.0, WBC’s are 1.7 and alkaline phosphatase (liver enzyme) is 354.  So I bought myself a round of antibiotics and a liver ultrasound.  LUCKY ME!  And I thought I never won anything…

At least I have set plans for the week, thats something new haha.  It’s not all sucky, today I got to go out to lunch with one of my coworkers.  It was so nice to hear about the things happening at work and how renovations are almost done! I’m so excited to go back!  January has flown by so March will be here before I know it!  I’m definitely having baby withdrawal.  Give me all the snuggles!

And…I never have to worry about being too bored.  Something “exciting” always seems to find it’s way into my life.  After bringing Corbin to the vet every week for 3 weeks to fix his chronic ear infections, last night I discovered my cat has worms.  Like seriously?  Am I being punked?  I have to be on a hidden camera show, right?  So now Nala is quarantined in the office until Friday.  She received a deworming medication and a flea killing topical medication.  She’s extremely upset with me since typically she sleeps in my bed, but mama ain’t got no time for worms.  (Snaps fingers in a z-formation).

Alright that’s my cue.  I need to go to sleep now.  I’m getting delirious.  As least I make myself laugh.  I feel like with all this stress, what else can I do?  I’m finding really stupid things funny lately.  Maybe it’s the delirium or maybe it’s my coping mechanism.  Example being, my mom called me earlier to get updates on my day, and she rolled down the window to throw her pear core out…and she missed.  It ended up hitting the inside of her car and falling into her purse.  Now to the average person, that might not be that funny, but I found this hysterical.  If you’ve ever driven with my mom you know she really winds up to throw fruit out the window so I’m just picturing the arm motion and can hear the thud. I’m actually smiling to myself right now as I type this.

Thankfully for me, tomorrow is a new day.  Hopefully it will have less worms and more laughs.  Goodnight.

 

 

Small wins…

…are still wins in my book.  Today, I made it from my bed…to the couch.  Cue the marching band and screaming crowd.  Thank you, thank you.  I’d like to thank the little people, aka Corbin, for needing to go outside.

Round 4/6 was on Tuesday.  So yesterday and today have sucked.  Yep, I’m saying it.  It sucks.  I feel like crap.  It’s like having the flu for a few days every 3 weeks.  Sounds fun, doesn’t it? Wrong.  Not fun.  But only 2 more left to go.  I’ve gotten myself so anxious about how I’m going to feel after chemo that it definitely makes it worse.

I also ate a sandwich for dinner…that I made.  All. By. Myself.  Yep.  Again cue the screaming crowd and let me take my bow.

Yesterday, as I laid in bed…all…day.  I had a lot of time to think.  As close as I am to the finish line, it’s crazy to me how I feel like my life is at such a standstill.  And it just keeps moving on without me.  It’s weird to think that there will be babies that come through the NICU that I’ll never meet and the seasons will change as I sit in my house.  I can’t wait to feel like a real person again.  I’m so excited to go back to work, I’m counting down the days.  I didn’t know how much I truly loved my job until I couldn’t be there.

Have you ever seen the movie Shrek?  When he describes that being an Ogre is similar to being an onion, as there’s so many layers.  Well that’s what I feel like.  The onion, not the Ogre.  Although, some days I feel like I look like an Ogre when I’m feeling really crummy, but that’s beside the point.  I also don’t mean that I smell like an onion either.

I’m getting off topic here.  What I mean is that having cancer has added another layer of anxiety to my life.  I had finally felt like I got to a good place with my transplant and my Crohn’s and felt like I could really live my life.  And then this happens.  It so quickly brought back all the feelings of when I was having recurrent hospitalizations and I could never see the end.  I don’t want to have to live with the fear of reoccurrence of this cancer.  My doctor told me that when chemo finishes, I have to get a PET scan every 3 months for 2 years.  How am I expected to move on in my life when the reminder that I have/had cancer gets thrown at me every 3 months?

This is a slippery slope that I’m still trying to navigate.  It makes me feel sick, on top of the nausea I already have, that in my short 28 years of life, I have incurred more than any one should in their whole lives.  It’s a scary thought that I’ll be stuck in this rut for the rest of my life.

I’m trying to be really transparent about how I’m feeling through this time in my life.  I feel like a lot of times people are afraid to say the things that really scare them at moments like this. My dream since I was a little girl was to always be a wife and a mother, and I hope to one day fulfill that dream.  I realize that with being with me comes a lot of baggage.  Shit, most of the time, I don’t even want to deal with all my life comes with.  But I think that 99% of the time, I handle it really well.  I take care of what I need to take care of and keep myself healthy.  But I realize that being with a woman who has been sick she was 9 years old is a lot.  Choosing a harder life is not something that is for everyone.  But I know that aside from all of the hard stuff in my life, I also offer a lot of really great things.  It’s scares the crap out of me to think that I may be alone for the rest of my life, but my faith in God tells me that I don’t think I was put on this earth to be alone.  I have so much love and happiness to give.

This thought has been swirling around in my head for a few months now, and scares me more than anything else.  Despite everything I’ve been through, I still have such a love for life and truly enjoy living.  I don’t take things for granted because I know how quickly it can be taken away.  I hope if you take anything from reading my blog, it’s that life is short.  Too short.  Try not to get too caught up in the every day stresses.  Take a step back every once and a while, and figure out what the most important things in your life are.  When you’re faced with a challenge in your life, an illness, or even on your death bed, are you really going to be sitting remembering all the money you made?  Or about the memories you made with your loved ones?  Live every day like it’s your last, and don’t ever be afraid to tell people you love them.

Busy

I feel like my attention span is limited lately.  The amount of times I’ve sat down to watch a movie is really ridiculous.  I have so many thoughts constantly running through my brain and the list of things I should be doing consume my mind.  So sitting down to write on this blog seems like a chore.  I enjoy writing on it and updating it, and I know no one expects anything from me, but lately I just feel like I no longer want cancer to steal my life from me.  I want to go out and be with the people I love and not be so connected to social media and technology like I was before.  It used to be a distraction for me, but now I just feel like I’m wasting days and I don’t want to do that.

A lot has happened since my last updated.  I had a PET scan last week which showed great news!  One of my tumors is completely gone, and the other shrunk from 5cm to 1.2cm!  My doctor seemed “okay” with the results.  She was expecting that the PET scan would be clear.  So I think she was a little disappointed when it wasn’t.  I was still super excited about these results, knowing things are going in the right direction.  So excited in fact, it called for a celebratory lunch at Olive Garden with my parents.  YUM!

Today is round 4 of chemo.  The time from the last chemo seems like it flew by.  Which is great.  I had a lot going on between the holidays and the PET scan that today came really fast.  And we’re already halfway through January.  After this, only 2 more doses of chemo!  I can’t wait to be done with all of this and start growing my hair back.  And to get back to work!  I can’t wait for the day.

I did get to do a lot of fun things over the past few weeks which also helped time to go by so quickly.  I had visits with my donor mom, my cousin, a family I used to care for, one of my best friends and her new baby, friends, and lots of time with my parents, siblings, and awesome niece and nephew.

As tired as I am, I’m still seeing the light at the end of the tunnel.  I’m so much happier being able to see people.  Being alone in my house is very lonely and segregating.  I can’t really go out to highly populated places, but being in small groups has been great.

So now I sit and wait to get my poison.  It’s very strange to be feeling “good” and go into the infusion center to voluntarily get a medication that I know will make me feel crappy. That has been giving me a lot of anxiety.  I’m thankful to have my parents here with me today, it’s a good distraction.  We’re watching HGTV and eating lots of snacks.  I’ll try to fit a nap in at some point today.

After this round, only 6 more weeks to go. February 26th, I’m waiting for you!

 

Gone

Well…it’s officially gone.  My hair, not the cancer.  I mean, maybe the cancer is gone.  We’ll fine that out on Monday at my PET scan.

Anyway, I had a moment of strength this morning and decided today is the today to… paaaaartayyyy. No, I’m kidding.  To shave my head.  Definitely not something I ever thought I would do, or say. The majority of my hair fell out very quickly but I had some hair at the base of my head.  So when I wore a hat, it looked like I had more hair than I actually did.  Fooled ya!

After my blood work today, I decided to go to my parents house to see my niece and nephew.  My sister had the day off from school because of all this glorious snow, so she was there too.  That’s when I decided it was time.  Originally I asked my dad to shave my head.  He has experience, he’s balding, and buzzes his head pretty frequently.  But he respectfully declined.  As strong as my dad is, I think it would’ve been hard for him to do that; I’m his baby.  But my sister…my sister was game!  She cuts her husband’s hair all the time, so it was kind of like I had a professional.

So after family nap time, yes every single person in the house napped, it was time.   I talk about it like I’m going in for surgery.  It really was not that intense, but definitely emotional.  We all went into the bathroom, Aubrey and RJ included.  My sister, Jen, put some music on for me, and away we went.

I decided to video tape the whole process.  After my transplant, I regretted not taking more pictures and videos because I thought I looked bad and ugly.  But this time around, I’m in a different place with it.  While I would prefer not to be bald and sick, if I can be an inspiration to even 1 person going through a similar situation, that’s good for me.

The sound of the clippers is definitely not my favorite sound.  I don’t associate anything good with them.  The amateur group didn’t think to cut my hair before shaving it, so it took a little longer than I expected.  We also didn’t think to put a towel around my shoulders, so when we were done, I was very itchy.

The whole thing didn’t seem as hard because of who I had around me.  My sister, aka the beast, going to town on my hair, making me look super fly.  My mom, offering words of encouragement and love.  RJ who just sat there and looked cute.  And Aubrey.  Oh Aubrey.  How I am so thankful for this child.  She was dancing and even shaved a little bit of my hair off.  Not sure what I would do without such a loving and supportive family.

I got a little emotional during it, my hair is everything to me.  I feel like it defines me.  It sounds silly, but it does.  I’ve been through a lot of body changes in my life, being on and off prednisone and gaining and losing weight because of it.  My hair hid my face a bit when I was uncomfortable with the moon face.  It was almost like a security blanket.

As sad as I am to see my hair go, I know it will be back, and better than ever.  There are some pro’s to not having hair.  Here’s what I’ve come up with so far:

1. I save money on shampoo and conditioner
2. It takes me about 10 minutes to get ready to leave the house
3. I lost some weight
4. I get to try out new hair styles (although this wasn’t the way I would’ve wanted t go about it)

If you think of anything to add to the list, feel free to let me know.

This whole thing has definitely sucked, and most definitely not where I thought I would be at the beginning of this whole ordeal.  Cancer sucks.  Plain and simple.  But the way I react to it doesn’t have to.  Of course I have my bad days, but I have plenty more good.  Without my hair, I’m definitely colder and more aware of any breeze, especially during the coldest week of the year.  Yeah, I didn’t totally think that through when I chose today to shave my head.  But…I’m gonna rock this, just like I do everything else.  Hair or no hair, I’m still me.  And that’s great.

Tree Stories

Have you ever heard of tree stories? No?  That’s probably because my family invented them.  My mom is one of 6 siblings.  So, in turn, I have 14 first cousins.  And between us cousins, we have over 35 children.  Although we mostly all live within the surrounding towns, we don’t get to see each other all that often anymore with everyone’s busy schedules.  When we all get together for a holiday or our family picnic, there’s a lot of catching up to do. So when we are updating each other on our lives, we have learned to not only hold our own conversations but actively listen and participate in about 3 or 4 other conversations at the same time.  If you don’t, you will most definitely miss something.

It doesn’t take long to develop this skill, and even the youngest of the clan can do it.  So I learned at a really young age to have a million things going on in my brain at once.  Now, I’m also a female and a nurse, so that’s just a recipe for disaster.

Let’s also add on chemo brain to this already failing recipe.  I didn’t know chemo brain was a thing until I had it.  It’s this incredibly infuriating side effect where I can’t remember things, I can’t find my words, and I lose my train of thought really quickly.  Maybe because the chemo kills brain cells along with the cancer cells? I’m not totally sure.  What I am sure of though, is it is extremely annoying, and I can’t really afford to lose TOO many brain cells 😉

So, here you have a balding, forgetful, achy cancer patient.  I’m basically a 90 year old trapped in a 28 year old’s body.  But that’s beside the point.  My family and friends have been incredibly wonderful over the past couple months.  They have really made a point to visit with me as often as possible.  But, they still have lives and jobs and can’t be with me every minute of the day.  So I spend a lot of time by myself.

And here’s where the tree stories come in.  It’s currently 12:36am and I decided to write a post about the random thoughts that are bouncing around in my head at all hours of the day…and night.  Now, I’m not sure if it’s because of the lack of activities in my life right now or the time I spend by myself, but I frequently find myself lost in thought, completely unaware of how I got on the current topic.

Now really, why does it matter if I can’t remember why I’m thinking about what I’m thinking about?  Honestly?  It doesn’t.  It’s just super aggravating to not remember what the heck I’m thinking about.  Or typing about.  So really this entire post is completely irrelevant, but

Wait, what was I saying?