Changed

Well, it's been quite some time since my last post, and I recognize now there's a reason for that.  I completed my last radiation treatment on August 18.  I choked back tears as I rang the bell with Julia, and I was so happy that we got to do that one together.

 

The next day was perfection.  My parents, Eric, Julia, and I went to Indiana for a Shine Festival.  It was gorgeous weather, and we got to set out our little picnic area, listened to music, and Julia got to jump in a bounce house while we waited for it to get dark.  We each got a biodegradable lantern and wrote any wishes on them. Then, it was time to launch them into the sky.  It was pure magic, and it was nice to do something physical and symbolic to release everything. I would do it again in a heartbeat.

 

Now for the reason I haven't blogged in a while: I think in my head I was just done and over it all, and I wanted to run away from it as fast as possible.  Now, I know deep down that wasn't going to work long-term, but after that marathon that started in February, I was just over it all and wanted to get back to "normal."

 

A few weeks later, I had a meeting with my nurse navigator.  She gave me a book on survivorship and a packet of all my medical history: When I was diagnosed, type of cancer, dates of surgeries, dates of chemo, type of chemo, start and end of radiation, and medications.  It's a thick packet.  She also went over the long-term side effects of all the treatment.  The thing that stuck with me the most though, was what she said about my emotional state and personality.  She said to me, "Now, everyone is going to think that now that you're done with treatment you're going to go back to normal.  But that's not the case.  This has changed you, and even you don't know how you're changed, so it's difficult to communicate that to people, and you're going to be frustrated because you're still figuring that out."

 

Amen to that x1000. 

 

Now that it's been a few months though, I am able to reflect and see some ways I've changed.

 

1. I Trust More - This is a big one.  I think it's really easy for those of us who are believers in Christ to say that we trust in God, but once you're faced with something like fighting for your life, you really have to.  And you don't have a choice.  For someone who is admittedly a recovering control freak, this was the hardest and most valuable lesson for me.  It feels so good to know that God has my back.

 

2. I Worry Less - This is a direct result of number one.  I've even seen evidence of this in my work.  Because I trust more, I've learned to not worry about things as much (or sometimes at all) any more.  I simply don't allow it.  I wonder where it will really get me and how much further it will get me.  The answer is always nowhere and not any farther at all.  In fact, recently I had a stressful task that always comes around certain times of the year at work.  I knew there was nothing I could do about the situation until a certain day, so I didn't think or worry about it until I could actually work on it.  It turns out, everything turned out great.  I then thought, "What if I had worried all week about this?  I would have stressed out, wasted productivity on worrying, and it would have been for nothing."  It's just not worth it.

 

3. I Seek Out Help - I was so overwhelmed with support this year (and two years ago) and it has helped me to not only receive help, but be ok with asking for help.  Pride can be something that stands in our way a lot.  But people have good hearts and want to help, so why not let them?  Also, I've recently started seeing a therapist to work through some individual life issues I'm dealing with, and it has been tremendous.  I look forward to each session and it is helping me build more self-awareness and work through the obstacles I currently have. 

 

4. I'm a Hypochondriac - Any twinge, pain, jab, anything.  I wonder, "Could it be back?"  But then that brings me to my worry stage and I stop myself there, and I don't allow it to go any further.  It's not that I put anything on the backburner, it's just that I allow time to play out and see if any patterns develop.  If they don't, I'm most likely fine, so I move on.  However, I do think every day how lucky I am.  The other day I was driving and thought to myself, "It is so great to feel healthy."  I think especially at my young age, we're not used to thinking our bodies could fall apart or that our lives could end.  We think we're invincible, and typically the older you get the gradually your body deteriorates.  That didn't happen for me.  I got a slap in the face and a reality check.  But I'm thankful for it, because now I know what I have, and I'm so grateful that I have it. 

 

5. I Think About Health Differently - Like most women, I used to worry about how I looked, if I was thin enough, and if I'd feel good in a swimsuit in the summer.  None of that matters any more.  That's not my goal.  When your body has been brought down, and every piece of your body down to your fingernails is negatively affected, you think about health differently.  I no longer want to be thin--I want to be strong.  I've started out slow (at the suggestion of my nurse navigator) by doing yoga via YouTube each evening.  Then I thought, "I need a goal, or I won't stick to this."  So what did I do?  I signed up for a (half) Tough Mudder: 5 miles of running plus 13 obstacles that include climbing, swimming, crawling, etc. in mud and water.  It's not until the end of August, so I feel like that's enough time to get in shape for it, but I needed that goal ahead of me so that I can work towards something.  I'm nervous beyond belief (I NEVER run), but I'm also really excited about this challenge I've set for myself.  The best part is I've got at least 6 other friends (who happen to be co-workers) to do it with me and be a team.  I'm super pumped.

 

These women (from Wonder Woman of course) are my new body role models.  Look at how strong and beastly they look!  I love it!

I'm still in the process of figuring things out, but now that I'm a few months removed, it's been good to reflect and see how I've morphed.  Maybe as my hair grows, my self-awareness will grow as well. 

 

 

 





Music

A few quick updates first:

-I finally did my MRI on Thursday, and I received the results.  I'M CLEAN!!!!  Now I can truly celebrate next week after my last radiation treatment!!!  Next week is my boost and I will just do the area around where they did my lumpectomy.  I'm so happy the big area is done because under my breast was getting pretty rough. 

-My sister-in-law Mary is awesome and I love her.  She surprised me when I found her sitting in the waiting area waiting for me when I arrived for treatment on Friday.  It totally made my day!!

-My hair is starting to take off!  I still have a ways to go, but I feel like I actually have hair now.  It's also insanely soft, and when I'm stressed out, I rub my head.

 



Now, I'm no musician.  I sang in choir in elementary and middle school, and took piano and trombone lessons as a kid-- so I can read music, but that's about it.  I wish I could do more.  But I LOVE listening to music of most all kinds.  I would much rather have the tv off and music on in the house, and I always have it on in the shower and the car.  I think it's pretty magnificent how music can transport us to a time in our lives in an instant.  I love listening to and analyzing lyrics of a song, wondering the intent of the musician, and also seeing how I relate and apply it to my own life.  I love searching for the right song to fit my mood at the time.  I've had a few songs that I have consistently listened to throughout this journey.  They are:

Florence + the Machine - Dog Days Are Over
Oh this one I love so so much and play it a lot, thinking about the end goal, when this would all be over.  I have blasted this sucker in the car as I scream sing along, tears rolling down my face. 

 

Miranda Lambert - I Just Really Miss You

Yes, I know this song was most likely intended for an ex-boyfriend, but I applied it and played it when I missed my two best girl friends, both of whom live out of state. 

 

 

BORNS - Electric Love

This song always reminds me of Julia.  Again, probably meant for a lover of some sort, but the lyrics totally remind me of my baby, and she has a way of always waking me up and bringing me to life when I need it. 

 

 

 

James Morrison - Precious Love

When I needed a boost of happy and to be reminded of how good I have it, or when I knew it and just wanted to revel in it, I'd listen to this.  I love his raspy quality along with the inherent happiness of this beat. 







The Wonder Woman Theme Song
I mean, come on.  This movie was AH-MAZING!!!!!  I was so obsessed when it came out and was so terribly sad I had no hair at the time because I so badly wanted long, wavy hair with a few side braids to look like a bad ass amazon woman.  I can't wait until September when it comes out on DVD and I can have it playing in the background all the time.  Can't muster enough energy to do dishes?  Play the theme song.  Done.

The Beatles - Here Comes the Sun
Julia's teacher taught her this song, and I love that she did.  We would listen in the car on the way home all the time and I felt like the words were so hopeful and fitting to what we are going through.

Florence + The Machine (again) - You've Got the Love
When I listened to this song, I actually about God being the one providing the love.  Listen to the lyrics.  So perfect.  And her voice is so rich and strong, I love it.

 



So there it is.  Basically the soundtrack to my journey these last few months.  I know I for sure mentioned some of these songs in past posts, but here they all are together.  Love 'em.  I will for sure continue to sing (regardless of how many dogs howl). 

"Cancer Isn't for Sissies"

I am so tired.  Both mentally and physically. 

Yesterday I did radiation and saw the nurse and doctor like every Monday. I was doing pretty well and just mentioned my fatigue.  They both said there's nothing to really do about that, and I knew it, I just wanted to mention it.  However, by the time I got home that same day, I was shot.  I felt like I had the flu.  My body was so weak and tired.  My left breast felt swollen and hurt so badly whenever I'd bend over.  I couldn't stop shaking.  When I took my pill the glass was uncontrollable. 

Eric had to work that night, and that meant I had to give Julia a bath and put her to bed.  Luckily, she cooperated with me, and any time she would goof off I'd say, "Julia, please help me.  Mommy doesn't feel good." Then she'd comply.  I ended up going to bed at 8:30 and got a record 9 hours of sleep.  Sleeping was uncomfortable though, because I couldn't lay on my left side, and any time I'd turn over, any weight I put on it hurt. 

This morning I was scheduled to report to the hospital at 7:30 for an MRI.  3 weeks ago, I was experiencing shooting pains in my right breast.  They were very reminiscent of the pains I had prior to finding the lump, and I also thought it was odd that it was my right breast, when we've been radiating the left.  I told Dr. U's nurse, and she said to see if it goes away after a few days.  It didn't, it got worse and constant.  So I called the next day and told them I wanted to come in.  Dr. U said he didn't think it was anything, and that it was in my head, but that he knew that answer wouldn't suffice for me, so he ordered an MRI. 

So here I am, 3 weeks later, trying to get it checked out.  I scheduled it for the earliest appointment so I could get right back to work.  Seeing as though this is my third MRI in 2 years, I was pretty used to the drill.  I felt bad for the nurse explaining to me what to do because I think my face said something like, "Yeah, yeah, I got it."  I changed into the scrubs and filled out their paperwork. 

At this point, any paperwork takes a while.  I have to list all my surgeries (when and where?), medications, history of cancer, family history of cancer, if I've had chemo (when was last treatment?), if I've had radiation (when was last treatment?), and on and on.  My favorite question though was: Do you have implants?  If yes, what is the make and model?  I thought, "What, like a car?"  I imagined a '55 Chevy Bel-Air since that's my favorite classic car. 

http://www.onallcylinders.com/2012/09/09/reborn-jeff-and-trish-melnichenkos-1957-chevy-bel-air/

 

So they call me back, and they tell me to wait a bit because the contrast machine was broken and they were trying to fix it.  Well, after 15 minutes of them trying, they couldn't get it to work and said I'd have to come back.  So they told me to come back at 2:00.  It was 8:15 at this point, so I walked over to the Cancer Center to see if they could fit me in for radiation.

I was able to get in, and they did my treatment pretty quickly.  But I told the techs I felt like my left breast was swollen.  She said she'd look at my set up and see if anything changed, but it hadn't.  She also took pictures to compare to the first week and she said those were also the same.  "Oook..." I thought.  Who can deny that then?  I told her about my shaking and my trouble with movement and she said I could talk to the nurse. 

When the nurse walked in and I started to talk, I just started bawling.  I told her what was going on and that I just wanted to know if it was normal or not, and if I just need to suck it up or if something wasn't right.  She did say that there could be some swelling and to take ibuprofen to take the edge off, and since it's anti-inflammatory, it could help with the swelling.  She told me I was doing great, that my skin looked really good, and if I can get to Friday then next week is just the boost.  She said, "I know you've been through a lot, and you're very strong.  Cancer isn't for sissies."  She was very sweet and very motherly, which made me cry harder. 

I kept crying as I changed, and then I got to the car and just wept.  Even when I got to work, I was pretty candid about how I was feeling and shed a few tears even there. 

The afternoon rolled around and it was time to go back to the hospital for the MRI.  I arrived and waited for 30 min.  Then I went to the back, changed into scrubs again, and waited another 45 minutes.  When they finally took me back, I told them I have bad veins and it's hard to find a good one sometimes.  That fact was confirmed when it took 45 minutes, 3 attempts, and a vein finder, and they still couldn't get the IV in.  As I was laying on the table, I had a few tears trickle down my face because I was just so frustrated.  They told me I'd have to reschedule and tell them I have hard veins to find, and that they'd schedule me with the IV team next time. 

I changed as fast as I could (again) and walked briskly to my car and wept (again). 

I'm tired.  Physically and mentally.  I'm tired of being a pin cushion.  I'm tired of being sick.  I'm tired of being weak.  I'm tired of hurting.  I'm tired of being limited.  I'm tired of worrying.  I'm tired of having hard conversations with Julia.  I'm tired of feeling like I'm missing out. 

I want peace.  I want health.  I want to live my life and not worry and plan my life around treatments. 

I'm so close to the end.  Only a week and a half left of radiation.  But for some reason, I feel like I'm running out of steam right before the finish line.  I have no choice though.  I can't say, "Stop, I'm done."  I have to follow through.  And as tired and as drained as I am, I have to keep pushing.  I know I won't be 100% on that last day, and it will take a few weeks before I fully recuperate.  But just knowing that I'm done with active treatment will be liberating.     

https://www.theodysseyonline.com/life-ultimate-cross-country-race

In the meantime, I'll continue to do things that feed my soul, and surround myself with good people.  My friend Jenny met me for dinner and ice cream afterwards, and we took advantage of the beautiful weather and walked around downtown Naperville.  It was hugely needed after a long, emotionally raw day.  I'm so grateful for those that will help carry me to the finish line.

Strong Like Mom

The radiation fatigue has hit.  This whole weekend I've felt so lethargic.  It's not really a sleepy type fatigue, it's more just a fatigue that reminds me of depression, where you want to do things and be productive, but you just can't bring your body to get up or get motivated to carry those activities out.  All weekend my mind was racing as it normally does, but I just couldn't do much.  The couch and bed got to know me quite well.  They wondered where I went.  Even today, by 9:30 I told Eric I needed a break, so he took Julia to a few stores to run errands, and I watched I Love Lucy and fell asleep on the couch. 

By 1:00 I decided it was time to shower, especially since I had made plans to meet up with a friend after Julia was in bed.  When I got out of the shower, I realized how raw my skin felt right under my breast.  I threw some yoga pants on, and slathered myself in aquafer.  Then I just laid on the bed for a while, waiting for some of it to soak in because it is so greasy it has been staining my shirts. 

That armpit is not looking good. 

Ouch.

I heard Julia come upstairs and thought, "Alone time is over."  She came into my room and had this immediate look of concern on her face.

J: What are you doing?
M: Laying down.
J: Why don't you have a shirt on?
M: Because my boo boo hurts. 

What happened next totally threw me.  She starting screaming crying, ran to do the door, and then yelled, "It's not fair!" and ran to her room.  I laid there for a quick second thinking, "What just happened?" I heard Eric come up the stairs and he was asking what was wrong and tried to console her.  I threw a shirt on and went into her room and sat on the floor with her where she was still crying hard. 

M: Julia, what's wrong??  Are you upset?
J: *Nods head*
M: What are you feeling right now?
J: Sad.
M: Why are you sad?
J: I don't know.  I wanna go in your room.

So we went onto my bed and I told her I wanted to talk to her. 

M: Julia, remember how I have cancer?

I saw her thinking back, and she shook her head yes. 

M: Well, Mommy's been going to the doctor because we're still trying to get rid of the cancer.  Every day I go and they point lasers at my boo boo to kill the cancer.  It's good, but my boo boo hurts and I'm tired.
J: Oh
M: But do you know what?  I'm so proud of how strong you've been through all of this.  It's really hard.  Look at your shirt though, do you know what it says?

She just happened to be wearing the shirt my sister gave her.

M: It says, "Strong like mom."

She then looked down and took her finger and dragged it across each word.

J: Strong. Like. Mom.
M: Yes, you are.  I love you.  Can I get you anything?
J: Milk and Lucky Charms.
M: Ok, do you have any questions?
J: Yeah, how come they have a water table like ours? (She gazed out the window admiring the neighbor's water table.)

 

 

Trying to understand, but unhappy in the meantime. 

And that was that.  But I'll admit I shed a tear or two during that conversation.  Looking back, I realize that was my fault.  I've been pretty back to normal until this weekend, and she probably thought I was doing just great.  But I never explained to her about the radiation, only every morning that I have to go to the doctor.  So when I told her I was hurting, it's no surprise looking back that she got upset.  It was a major wake up call to me that because it's not so visible, I still have to talk about it.  Otherwise, when it does become visible, it comes as a surprise to her, and times like these are going to happen.  

Photo from http://www.chinadaily.com.cn/sports/2014-03/19/content_17359254.htm

Moving forward, I want to continue to talk about it while not going overboard with it.  It's all about finding that balance.  Isn't that what a lot of parenting is though?  Trying to strike the right balance with any topic, both for you and your child.  It's like walking a tight rope, praying that you're finding balance to continue moving forward, but as you're walking you carry that inevitable fear of failure and falling.  Today I definitely fell.  But I'll climb back up and try again.  Lucky for me, I know Julia is a resilient kid that allows for me to climb back up.  I love being on her team.