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.