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.

Radiation

I'm halfway through radiation.  It feels like it's going by rather quickly, but probably because I'm so distracted with other parts of my life, mainly work.  It has also become so routine, as I've been going Monday through Friday since July 5.

Every day I get up, shower, get ready, and drive to the cancer center in time for my standing 7:45am appointment.  I walk in, say hello to the receptionist who always welcomes me with a smile and says, "Good morning, Malita!  I'll check you in!"  I say thank you and exchange pleasantries, and then I sit down and say hi to the others in the waiting room.  Over the last 3.5 weeks I've noticed a revolving door of regulars.  The same people come, and then you don't see them and new ones show up.  Some people are quieter than others, and others are more outgoing and friendly. 

I don't wait long before I hear my name, and one of the radiation therapists asks how I'm doing.  I walk into the changing room where I grab a gown out of the drawer, then step into a changing room, shut the curtain, and change from the waist up.  Then I put my clothes and purse in a little locker that reminds me of my 7th grade locker it's so small.  I take the key and sit and wait, while perusing a magazine, wondering if I should get into something or not in case they call my name soon. 

When they call my name, I take my key and walk into the radiation room.  There is a long, flat board that I lay on, and it's surrounded by the radiation machine.  At the top of the board are two handles to hold onto.  At the middle is a little bump which is for me to lay with my rear up against it, as if I were sitting on it, and a white sheet is draped over the entire board.  I take my left arm out of my sleeve, lay into position, and then they place a bolster under my knees.  They ask if I want a warm blanket and I always say yes. (Who doesn't want a blanket out of a heater??) 

There are always two techs in the room, and sometimes a student.  I position by placing my hands on the handles above my head and turning my head to the right.  We talk about our days and what's ahead, or how our days yesterday went.  A green laser lines up to my tattoo in the middle of my chest.  Then one tech is on each side of me.  I believe there are lines on the board for me to line up against.  They lift the sheet and each person has to be "on."  They may adjust my hips, my arms, or my shoulders initially, and then it's a dance between them getting me into position by moving the sheet.

"I can go in a line."
"Ok, I can go out a line."
"I need a quarter roll."
"Can you go in another line?"
"Uhh I could go in."
"I need another quarter roll."
"That's me."
"I need another line."
"Ok that's me."
"That's me."
"Perfect."

Then they grab the bolus, which is a thick piece of rubber-like material that they place on my breast and armpit.  The bolus increases the radiation to my skin, which is where we want it to be so it's not going through to my back.  They use tape to keep it in place, and then when they're set they say, "Here we go, Malita."  They step out and close the thick, Wizard of Oz door. 

I lay still, and the first of the two rounds I am looking at the radiation machine.  The part I see is this large circle with a window pane.  Inside the window pane are these moveable pieces that are grey and remind me of the inside of a typewriter.  The way that they move together and apart though remind me of the doors and how they open and close in Star Wars.  When the pieces move and adjust, it sounds like a disposable camera rewinding.  Then I hear a 4 second buzz, then a pause, and then a 10 second buzz that's a little louder. 

Then the machine moves to the other side, and the techs come in, remove the first bolus, and replace it with a second bolus.  This one requires more tape.  I don't see the radiation machine anymore since it's now on my left side and I'm looking to the right, but from the light inside of the machine I can see the curve of my breast projected onto the ceiling.  Then the techs walk out again, and I hear the same buzzes.  When it's over, I turn my head to the center, put my arms down, and they cover me up after they remove the bolus and the board lowers.  They help me up, I take my key, we say, "See you tomorrow!" and I go to the dressing room again.

I go into the dressing room, take out the prescribed steroid cream, rub it all over the area, then put aquafer on to lock in as much moisture as possible.  Then I wipe my greasy hands on my gown, put it in the laundry bag, and I walk out, saying goodbye to each person I pass.  Then I'm off to work!

On Mondays I see my Radiologist, but it's brief.  He says my skin is looking good for now, but that it's going to get worse.  I've noticed a lot of brown dots appearing, and the hair under my armpit is definitely back.  It hasn't bothered me as much as I thought it would, but I'm still a little grossed out by it.  Overall though, for how far into it I am I am pleased with how my skin's been handling it.  It's not really red or peeling, more just a dark tan at this point. 

Speaking of which, my hair is definitely coming in!  It feels like so much right now, that when I continue to get stares I wonder, "What are people staring at?? I have so much hair!!"  Then I look in the mirror and think, "Ok, I guess it's not THAT much."  But it's definitely progressing!  It's also incredibly soft and I can't stop rubbing the top off it.  I've also noticed my eyebrows are starting to fill in again.  Welcome back, boys. 

August 18 is my last day of radiation, and just like I rang a bell when I was done with chemo, I get to ring a bell when I'm done with radiation.  I walk past it every day on my way out.  I have a feeling that day is going to come sooner than I realize.  In the meantime, I continue to go on with my new normal routine.

Hair Watch

I decided I'll periodically post photos of my hair progress.  So far, I'm getting some peach fuzz!  It's like a light five o'clock shadow, but it's something!  I also noticed chin hairs coming in, haha.  I didn't miss plucking those, but tells me it's growing and things are bubbling under the surface!

No Man's Land

Tomorrow I start radiation.  When I went to meet with my radiologist for the first time, I received another reminder of how I'm still in the woods.  I had never met my radiologist, Dr. K, before.  He is so different from Dr. U., who is so loud, animated, funny, and so blunt.  Dr. K is quiet, calm, soothing, sweet, and also funny, but in a different way.  I felt like I had to lower my voice when speaking with him to match his demeanor.  He spent a lot of time with me explaining the process and what to expect.

He also told me I wasn't a slam dunk case, and he was still considering different things for me.  Most of those decisions had to do with which sets of lymph nodes he was going to go after: armpit, collar bone, and/or breast bone.  He said that there were different things he was weighing.  For example, if he does the breast bone lymph nodes, he could expose my heart to radiation, which would later lead to heart disease.  However, if he doesn't do my breast bone lymph nodes, then my chance of recurrence is then a little higher.  So there's not really a win situation with something like that, it's more of a, "What's the least damage we can do?" situation.

He also told me that the area we will be doing will essentially be a large rectangle over my left breast.  It will be from my collar bone, to my breast bone, to below my breast, to my armpit.  I was so disappointed when I heard this.  I thought, naively, that they would just be targeting where my lumpectomy was.  I thought, "Oh this will not be a big thing.  It will just be that little area that hurts."  WRONG!  Ugh, I hate that it's such a large area.  Perhaps what I'm most worried about is that when my hair grows back, I won't be able to shave my left armpit.  Gross.

Getty Image

I will have to go for 6.5 weeks, Monday through Friday.  Each session is only 10-15 minutes long, but I'm more just irritated that I now have to throw this in to my schedule.  Cancer is so annoying.

A week later I then went in for my simulation, where they used this special tape to outline the area they would be radiating.  Dr. K decided the only set of lymph nodes he's going to do are my armpit lymph nodes.  Once the tape was in place, they put me through the CAT scan so that the radiologists and physicists could analyze my anatomy and come up with a plan.  They then marked one verticle line on my breast bone, and one cross about 5 inches below, and then covered them up with clear stickers.  Then they tattooed a dot on each side of my body.  These marks are so they can perfectly line me up each time I go in.  Then I met the techs and they showed me the room I would be going to each time.

That's the table I'll lay on, and that machine moves at all different angles and is calibrated differently for each person.

In the meantime, I've been busy with packing as much as I can into these last 2 weeks because I know the next marathon is about to start.  I am definitely feeling better than when I had chemo, but I'm still not 100 percent, which has been frustrating.  My legs for the past two weeks have been so achey, sore, and tight.  They feel like I ran a marathon, and whenever I get up after sitting for a long time it takes me a while to get up, and I feel like an old lady.  This has been especially frustrating because I wanted to work out more, but I'm just so tired and sore.  I really need to work out because I know I've gained at least 10 pounds since I started chemo, I think mainly because I've been laying around so much.  I mean, if you are literally just laying on a couch and eating for a week (4 times), that's bound to happen.

I also feel like I'm bruising quite easily.  On Saturday we went to St. Louis and went to one of (what I think) is the coolest places on Earth: The City Museum.  This place is made of recycled and repurposed material, and is like a giant playground.  There are so many floors, tunnels, slides, and crawl spaces to explore.  You start down one path and really have no idea where it will lead you.  Eric, Julia and I started by crawling through this hole in the wall.  We ended up under a train station, and then crawled up and over one of the hallways, and had to climb through what looked like a giant slinky in order to get down and out.  It was so neat!

However, my claustrophobia totally kicked in, so it ended up being mainly Eric and Julia exploring together while I took pictures.  Eric was like a kid in a candy store and could have spent the whole weekend there.  Julia also loved the climbing and exploring and those two were like bosom buddies.  I was so proud of her because at one point, we were outside and were at the highest point possible and she was leading the way!!  She did get scared and kind of froze, but Eric and I coached her to keep going.  I almost had a panic attack as we were up there, because I realized my fear of heights has definitely intensified as I've gotten older.  Eesh!

See that tunnel at the highest point where kids are crawling?  Yeah, we were there!

After all of that climbing, walking, and crawling I was beat.  The next day my legs felt awful and were bruised everywhere.  Yesterday I spent the day cleaning and cooking, and I had to keep taking breaks to lay down, stretch, and put my legs up.  As one can predict, this made me feel frustrated.  I hate that I'm still limited even when I feel like I should be 100 percent.  I just want to go back to how I was, power through, have fun, and get stuff done.  I feel like everything I do is tainted and not good enough.  As I was washing dishes and feeling myself get weaker, I started playing the Wonder Woman theme song in my head.  I'm telling you it worked!  I got a burst of energy and kept going!  I know it sounds lame and totally archaic to be all happy about powering through washing dishes, but when your daily activities that should just be rote, aren't, it's the little things that become victories.

Today I plan on trying to enjoy myself as much as possible.  We always do a bike and buggy parade in our neighborhood, and then we are barbecuing with our closest neighbors.  This year I may even let Julia stay up to watch the fireworks.  (Anyone who knows how strict I am about sleep knows that this is a big deal.)

I feel like I've been in no man's land once chemo ended and I've been waiting for radiation to start.  In the Wonder Woman movie, there was a scene where she shed her coat, climbed up a ladder, and walked right into no man's land.  She fought, inspired others to fight, and they gained ground.  It's time to shed the frustration and self-pity, put the armor back on, and fight.  Let's do this.

Life is Fragile

I haven't posted in a while because these last few weeks have been awful.  My dear friend, Susie, whom I mentioned in my post about my second chemo session, has been living a nightmare.  I won't go into too many details, but in a nutshell, her husband, Matt, was admitted to the hospital on June 6, became unconscious, and never woke up.  He passed away on June 13.  Yesterday was the wake, and today the funeral.  They have two young girls.  I am devastated and can't believe this has happened.  I'm still stunned.  What's even more disturbing is that the doctors can't even give her a reason as to what happened or why he died.  Her life has been turned upside down in an instant, and she has lost the love of her life.  My heart aches for her, and I want so badly to help and to fix it, but I'm powerless.  All I can do is mourn with her. 

Two weeks ago, I also met my radiologist.  I will go into details about radiation in a different post in the future, but this visit was again, a reminder that I am not out of the woods.  He told me I was not a "slam dunk" case, and that there were things he was weighing before developing his plan.  This was 3 days after my oncologist told me he's antsy to get me on Tamoxifen so that I don't go into stage 4. 

These meetings coupled with Matt's death have especially put things in perspective for me.  Matt fought for his life and was taken in such a quick and freakish manner, where questions still swirl.  For me, I have confidence that I will beat this, but I'm fighting for my life in a totally different manner.  I also can't help but wonder if I'll have to fight again down the road, and not win.  It came back once already, who's to say it won't come back again.  The other day Julia had to go to the bathroom and she said, "Mommy, help me!"  I said, "Come on, you don't need me, you're a big girl.  You know how to go on your own." She said, "No!  I do need you!"  I said, "Ok, I hope you remember this!  When you're 16 and you tell me you don't need me, I'm going to remind you of this!"  And then I thought, "I hope I'm still around when you're 16." 

The last week I've felt healthy and my energy is back.  And the great thing is that I don't start radiation until July 5, so until then, it's like I'm back to normal (theoretically).  So I feel like I get a few weeks of health, and with this coupling of feeling like life is precious, I want to just do everything.  I don't want any moment wasted.  I'm to the point where I feel like sleep is a waste of time. 

However, this is contradictory to my goal for the year, both at work and personally, which is to practice rest, quiet, and self-care.  I've read Present over Perfect and it resonated so much with me.  I've been trying to be ok with quiet, and trying not to fill every moment with activity.  Summer has especially been welcomed, as I sit on the porch on the rocking chair.  Sometimes reading, sometimes talking with Eric, sometimes watching Julia play, sometimes just sitting.  It's been a welcome change to my constant hum of action.  Always trying to be productive.  Call me crazy, but I honestly believe that some of that contributed to my diagnosis. 

So now I feel like I've been having this tug of war with myself.  Getting as much packed in while I can, versus not spiraling back into becoming a do-aholic.  I haven't decided which route to go down, but unfortunately, I think old habits die hard.  Maybe I'll get lucky and strike a balance.  Until then, I'll keep praying for Susie and her family, and keep fighting my fight. 

Wake Up Call

Monday was an emotional day, both for the good and the bad. 

The Good: It was my last chemo treatment.  Hooray!!  I won't feel completely done with chemo until this weekend when I start to feel better, (currently I'm tired, nauseous, constipated, etc.) but it's nice to know that it's done and over.  I got to celebrate with my nurses and ring the bell that all last timers get to ring.  As I put my bag down to ring it, I could feel myself getting choked up.  I don't know why and didn't expect to get emotional, but it felt good to have my family and all those amazing nurses surround me, cheer, and clap as I rang that bell. 

The Bad: I'm so not done.  This journey will be longer than a triathlon.  It started with biopsies and ultrasounds, a lumpectomy, and chemo.  That's all done.  Now it's radiation and hormone therapy.  (Not to mention I had a double mastectomy 2 years ago). 

3 months ago my nurse navigator asked me if I wanted to meet with my radiologist.  I declined because I just wanted to focus on the task at hand each step of the way.  But as the end to chemo came near, I wondered about what was awaiting me around the corner. 

I've known I would have to start taking Tamoxifen, which is the hormone therapy pill I will have to take every day for 5 years.  My cancer is 95% estrogen receptor positive, basically meaning the effects of estrogen fuel my cancer.  This is actually a good thing because the Tamoxifen can take care of that pretty easily by blocking those effects.

Side effects of the pill though, include things like weight gain, hot flashes, irregular or no periods, mood swings, and depression. Let's take a look at that list again.  Irregular or no periods.  In order to get pregnant, a woman must be having periods. 

A History Lesson: Eric and I have wavered back and forth on having a second child since before I had cancer the first time.  We were about to start trying (Julia was 18 months at the time) and then I got diagnosed in March of 2015.  My mastectomy was in April, and my follow up surgery was in August.  After that I wanted to give my body a break, and I wanted a break from doctors.  Then spring of 2016 rolled around and we started talking about it again, then started trying, but it just didn't happen.  Then February 2017 is when I was recently diagnosed this second time around. 

The other medical note is that chemo would reduce my fertility by 30-40%, but I've been receiving injections every 3 weeks to protect my ovaries so that doesn't happen.  So I was kind of hopeful that maybe after all was said and done that we could try again.  But I left somewhat discouraged on Monday. 

Every chemo session I meet with my medical oncologist, Dr. U.  I had these questions swirling in my head about getting pregnant ready to go.  This is how the conversation basically went:

M: I wanted to ask you about the Tamoxifen and getting pregnant.  I was wondering if it was possible to hold off on the Tamoxifen and we try to get pregnant after radiation is done, and then start when all that is done.  Mainly because my daughter is already 3.5 and Eric is 42. 

Dr. U: Well, here's the thing.  From my perspective I'm actually really antsy to get you on the Tamoxifen.  In fact, I normally don't start patients on it until after radiation, but I'm going to start you 3 weeks in because I know that Tamoxifen will be good for you.  I mean at this point we hope chemo is working, but I have greater confidence in the Tamoxifen and that's why I want you on it. 

M: So what realistically is the earliest I could come off it and interrupt it?

Dr. U: Well, here's the thing.  You won't start getting periods again until earliest 6 months from now because of the chemo.  (Side note, I haven't had a period since March.)  So it doesn't make sense to delay the start of Tamoxifen.  You may also potentially get periods on the Tamoxifen, but we don't know until it happens.  If you don't, it will still take a few months once you're off the Tamoxifen for you to start getting periods.

M: And then who's to say I'll get pregnant right away.  That in itself could take a while.

Dr. U: Right.  The thing is, the Tamoxifen will prevent it from going somewhere else in your body.  Once it's somewhere else in your body, you're automatically stage 4 and incurable.  I want to keep you where you are and cure you.
.......................................................................

That was my wake up call.  I am so not done.  There's still risk.  I'm still vulnerable.  Nothing is a guarantee. 

And here I am trying to plan to get pregnant.  What good is having another baby if down the road I may not be around to care for him/her?  It's at that moment some of my dreams were dashed.  I always thought I would have two children, ideally two girls.  I know what it's like to have a sister, and I love it.  Deep down I've felt like our family has been incomplete.  I can't describe the feeling.  So to hear that it will either happen longer down the road, or most likely not at all, is heartbreaking. 

On Saturday, Eric, my grandma, and I were sitting in the backyard while Julia played in the water table, and she said, "I need a friend to play with." Eric said, "I'll play with you." Julia responded, "You're too big.  I need a little friend."



http://foreverymom.com/family-parenting/5-things-ive-learned-from-my-stillborn-son-audrey-scott/

I don't know that she'll ever get that little friend.  It's not to say I think only children are doomed or anything.  I have plenty of friends who are only children and they're pretty awesome.  I just think it's nice to have that possibility at least in front of you.  For Eric and I, we no longer have that luxury.  I wish I could just let it sit in God's hands.  But now I feel like we have to take control one way or the other: Interrupt Tamoxifen and try, at the risk of my own health?  Just go 5 years on Tamoxifen and we stay our family of 3 (4 including Chance)?  Adopt?  I don't know.  I just feel like at some point we have to make a decision, and I hate having to be so definitive. 

This whole journey has been a test in my trust in the Lord, and I feel like I've made progress.  Now I feel like I'm forced to take a few steps back because of this.  At this point though, today, there's nothing I can do.  All I can do is pray and reflect.  And I'll be doing some hard praying in the coming days and weeks to come, hoping for some direction, answers, and peace.  In the meantime though, I'm enjoying the blessing God has already bestowed upon us, which is our angel, Julia.  She is my joy and my light.  If we don't have another, at least I was given the gift to be called "Mommy" by this precious creature of ours.  I love her with my entire being, and am eternally grateful. 

Stares, and I Don't Care

Let's talk about appearances.  There's a few different looks I've been rocking lately:

1. The Scarf

Mother's Day brunch!

This is what I mainly wear at work.  I do it so that I'm covered up and don't freak people out (mainly clients).  Although it's massively itchy at the end of the day and I rip it off as soon as I get in the car.  I only know one way to wrap them, but I need to watch some YouTube videos and find some different ways of tying/wrapping them to change it up.

2. The Chemo Cap

It usually comes further down over my ears, but I had just woken up and was too busy loving on Chance to fix it.

I only have a few of these, but I like them.  Some look like they're wrapped, and have some loose frills in the back.  Yesterday I picked Julia up from school, and one of her classmates told me I looked like a pirate. I laughed for sure. My favorite, though, is my sleep cap.  It's so soft!!

3. The Wig

I received a wig for free through the American Cancer Society, and was so grateful because wigs start at around $800 at a low price point.  I've only worn it once, and that was for our family photos last week.  The reason I wore it was because I wanted to look back on those pictures and show generations to come from our family, and I didn't want to remember us as the "the time I had cancer." 

4. All Natural!!

On the train to the city.  I was sad because Julia didn't want to take a picture with me!

By far my favorite route to go!  Especially now that it's hot out.  I like just being me with no fuss.

Because I don't wear the wig, I often go out in public with either the scarf, chemo cap, or nothing at all.  I used to always do a scarf or chemo cap, and then take it off in the car.  Lately though, I've been moving towards wearing nothing at all the entire time.  It's just so much simpler.  I was talking to a co-worker about this preference, and she said, "Oh man, if it were me I would just hide away."

I think that's a very natural reaction to want to do.  I'm to a point though where, for the most part, I just don't care what others think.  I think of it this way: The people who I know, know what's going on.  The people I don't know, I'll likely never see again.

That's not to say that I don't feel the stares.  I definitely do, and the stares happen whether I have a scarf, chemo cap, or nothing at all.  Most stares are subtle and I don't really catch them until the end, and when I make eye contact with them, their eyes dart away, and they continue with their business.  Others do the same, but then I see look back after the eye contact.  Others are just really blatant in their staring, which makes me laugh.

http://pixgood.com/lots-of-people-staring-at-you.html

I was at a pool and received a tour so I could see if I wanted to take Julia there for swim lessons.  The tour guide was showing me the pool through the large, glass windows, and there was a mom sitting on the bench with her back towards us.  She turned her body to look behind and saw us, and then just kept staring at me.  It was so blatant and obvious since she had to turn her entire body to look.  I would look at her and then at the tour guide, and every time I looked back she was still looking at me.  Finally I just held her gaze and kept staring back at her.  She finally turned back around.

That has become my tactic now.  Whenever I feel heavy stares, I just stare back and they move along.  But honestly, I don't blame them.  I assume they are having a conversation in their head with themselves trying to figure me out: "Does she have cancer?  She's pretty young to have cancer, though.  Maybe she's just trying to be hip?  Do her clothes match that look, though?  She has a young daughter.  How does that fit?  Maybe it is cancer?"  We all do it.  We all see people that don't fit a mold, or that we have difficulty labeling, so our gaze lasts longer as we try to determine what that person must be like.  Then we quickly look away if they catch us.  I do it.  You do it.  We all do it.  It's our human nature (for some reason) to want to put people in a box.  I've just typically been a run-of-the-mill person that never required much questioning.  Now I'm not.

Because all of this happens every day, I've truly gotten to a point where I don't care too much, and that's why lately I've gone mostly with nothing at all.  My main decision on how to go these days is mainly based on weather.  Will I be hot or cold? Cold = chemo cap or scarf.  Hot = nothing.  That's not to say that I'm totally, one hundred percent secure.  I've definitely had certain times of uncertainty and with reservation.

Yesterday I volunteered to be part of a focus group for someone we know through Julia's school.  It was held in an office in downtown Naperville, and the participants were women with young children.  I had a chemo cap in my purse and thought that if I chickened out, I could throw that on.  When I arrived I left that chemo cap in my purse.  I went into a store to ask for directions (I was a little lost), then went to the focus group.  In my head I was always wondering how people might treat me differently, but it was great!  Nobody really looked at me funny, questioned me, or treated me any differently.

Here I am, world!

Afterward, I reflected on that positive experience, and it gave me even more confidence to just keep going, do what I want to do, and present myself without hiding.  It's been 4 months since I've been diagnosed, and I still have a ways to go.  Tomorrow is my last chemo session, which is great!  But then I have the next chapter, which is radiation.  I'm not nearly done yet.  So while the natural tendency may be to hide away, we have to remember why I'm doing all this in the first place.  It's to continue living.  So that's what I'm going to do, without reservation.

Love and Marriage

Today is mine and Eric's fifth wedding anniversary!!  We're a whole hand in marriage!  Wow.  What a ride it's been.  Some days I feel like we've known each other our whole lives, and others I feel like I'm still learning him. 

 

A few months ago I was talking to a co-worker who is engaged, and I asked how he was feeling about getting married.  He said he was pretty good and didn't really see how a wedding would change the relationship.  Over all the sense I got was that he didn't seem too worried about anything, and said, "I mean, I just don't see how it's going to make things different."  I responded, "Life just happens, and you don't know how you're both going to respond." 

Unsuspecting as to what's to come.

And it's true.  Cancer is my life and my reality right now.  Nobody could have predicted that I'd have to walk through this particular forest, and do it twice.  The other day I was getting ready and I asked Eric, "When we spoke our wedding vows and we said 'in sickness and in health,' did you think it'd be you taking care of me first?"  He said, "No way."  I think honestly we both didn't think that would happen.  I think simply because Eric is ten years older than I am, and I'm absolutely the more nurturing one, and I think we both just thought I would eventually take care of him.  But then God threw us this curve ball. 

What's strange is that back in January, I remember Eric and I having a conversation regarding how he handled my first go at cancer.  I told him that I was hurt at how he handled it because, in my eyes, he always acted like it was no big deal.  He never seemed worried to me, and I told him I was the most hurt when I told him that I got the call that it hadn't spread, and he said, "Oh that's good." He said it as if I told him it was going to be sunny and 73 degrees out the next day.  But he said he just never worried because he always knew that it was going to be ok, and that he wanted to be strong to me.  That everything he read it said to be strong for me.  I told him that's not what I needed.  What I needed was for someone to be scared with me and to walk alongside me during that time. 

So wasn't it funny, when just one month later I got diagnosed again.  Since we had this conversation recently, I told him explicitly what I needed from him.  I needed him to be open with me.  I needed him to share how he was feeling at the moment.  I told him I know his default is to go into strength mode in times of crisis (he was a Marine after all), but that I needed him to push beyond his comfort zone in order to help me.

I have to say, he hasn't been perfect, but he's definitely been better this time around, and I know it's been hard for him to stretch beyond that comfort zone.  He has told me how he's feeling, when he's scared and why, and has supported me in my decisions when navigating through all of this.  He has taken care of me during my tough days, taken time off to be there during treatments, and just held me when I needed it.  He has even gone to programs at the cancer center like a caregiver support group and to a group to find out what to do and what to say to best help.  Oh, and I can't forget the fact that he was the one who shaved my head!

Now, that's not to say this has all been rainbows and ice cream.  It hasn't.  We have had our yelling matches FOR SURE.  Times when I'm not feeling like my needs are being met, or times when we're both just tired and stressed.  I remember one battle when I wanted to talk about it, and he got upset and didn't want to talk about it because he said he thinks about it all day, people ask him about it all the time, and he just wanted a break.  Well, for me, I needed to confide in someone and process and needed him for that. Obviously our needs were different and just didn't align at that moment.  We were both burnt out and each antidote was the cause of the other's burn out.  Doesn't allow for much harmony. 

Marriage is hard.  It takes work.  As cheesy of a metaphor as this is, marriage is like a garden.  You absolutely have to tend to it every day, or your plants and flowers will begin to wilt or become overrun with weeds.  It has to be watered.  Weeds have to be pulled.  You have to take care of pests.  And all of this is done on the best of days!  Now imagine you have just riddled your garden with poison and you're trying to keep it all alive with that new variable thrown in.  Not easy. 

So, has our marriage been peachy keen?  Absolutely not.  Cancer is hard and it makes your relationships hard.  But I will say this: We are definitely stronger.  We are trying to learn each other during times of personal crisis.  How does one react and how do we help the other, while still trying to navigate the traitorous waters ourselves?  I also feel like in this short 5 years, we have been through a lot.  Becoming new parents, changes in jobs for each of us, and moving to a new house are some of the other changes we've been through amongst everything else.  We're choosing to become stronger over defeat, and in the meantime, I feel like our marriage is growing it's own little suit of armor.  We never wanted or asked for this path, but it's the path God has chosen for us, and we are doing our darndest to walk through it together successfully, in love. 

I can see the confidence coming through!  Nothing can scare us!