Sunday, September 11, 2016

The one about September 11th...but not THAT September 11th

On September 11th, 2015, I was an emotional basket case just doing my best to hold it together. Literally. It was two days after my double-mastectomy and reconstructive surgery and I was a mess of stitches and bandages and tubes. I had these new Frankenboobs and I looked like I was in a knife fight (and lost). It was a shitty day (for so many obvious reasons) and I remember watching a documentary on 9/11 and desperately wanting the phone to ring - I was waiting for a phone call from my nurse. I was waiting for the results of my lymph node biopsy. I wanted her to call and tell me that my lymph nodes were all clear. No cancer found. Success. I was willing her to make that call and tell me some good news. If I kept putting the positive thoughts/juju/vibes/wishes out into the universe, it would come to fruition, right? The last time I received a phone call from Kelly it was good news. (She was the one who called me way back in February 2015 to let me know that my original PET scan did not show any signs of cancer anywhere else in my body.) I was desperately hoping to continue the "Kelly only calls with good news" streak.

I love Kelly Fields. She helped me get through some of the worst parts of my life with honesty, optimism, and genuine kindness. 

On Friday, September 11th, 2015, nurse Kelly called to tell me that the six lymph nodes they removed and tested all came back CLEAN. That meant the cancer cells didn't pass through those nodes and didn't spread to other parts of my body. The only other time in my life when I felt relief like that was in the moments after I delivered my daughter and I heard her cry for the first time and knew she was alive and well. Monumental amount of relief. Relief the size of oceans. Seriously, that much relief. No hyperbole intended.

So here we are, one year later. It's September 11th again and guess who I saw today? I got to meet with the one and only nurse Kelly for my one-year post-surgery check up...and it was great.
Here I am in the parking lot right before my one-year, post-surgery check up. Oh what a difference a year can make.

September 11th, for all of the still very obvious reasons, is a day I'll never forget. But despite all of the sad connotations surrounding this day - - there will always be a smile on my face and extra big hugs for anyone who wants them. I can't help it. While I will absolutely take a moment (or two, or fifteen) to reflect on the loss and heartache and confusion our country experienced in 2001, I will also remember that this is the day I knew I would get on with my life. MY LIFE. LIVING, you know, definitely not dying. With the help of an extremely talented medical team and the support of my friends and family, I kicked cancer's ass.

Yes, this day means something to a whole lot of folks. But every year, in the late afternoon of September 11th, if you see me grinning like a fool, you'll know why.

Sunday, September 4, 2016

The one where I get my purple shirt

This year I participated in my first Relay for Life event as a survivor.
Let me tell you a little story...

This might sound a little cliche, and borderline trite, but stay with me. When I was going through chemo, in some of the very worst moments, I would picture myself walking the Survivor's Lap at a Relay for Life event. I would see myself wearing one of the coveted purple t-shirts, walking the survivor's lap, smiling and waving at my friends and family, knowing that it was all done and I made it. This daydream was the carrot at the end of my chemo stick. My mind was made up and I was going to get me one of those damned purple t-shirts.

There was a Relay event during the summer of 2015, but I didn't feel comfortable participating because there wasn't definitive proof the chemo had worked and I couldn't be sure the cancer was gone. I couldn't bring myself to wear the purple shirt if I didn't know for certain that I was a survivor. Surviving is one thing, but being a survivor is quite another.

On June 18th, 2016 I walked my lap wearing my purple shirt. I smiled and waved like I was frickin' Miss America. I waved to my family, my friends, my doctors and nurses. I smiled at other survivors. Hell, I even smiled at strangers.

Me and  my caregiver (AKA, my husband, Ben) kicking off the survivors lap. 

Here I am, waving and grinning like a fool! (...if you look right behind me, you can see my oncologist. Pretty cool that he was right behind me. Serendipitous and lovely.)

Me and my oncology nurse, Lisa. She coached me through my treatment and is nothing short of amazing. 

Me and two Lincoln Police officers, I may have gotten a little camera happy on my first lap!

In addition to the survivor's lap, which is emotional in its own way, there is the luminary lap. This takes place after dark, with all of luminaria lit. There is total silence except for a lone bagpiper playing Amazing Grace. Yeah. It's just as much of punch to heart as you think it is. This is the time for remembering those we lost and being immeasurably grateful for those still with us. This lap is powerful in a way that I have a tough time describing. I might have actually felt all of the emotions on the spectrum - even if only for an instant, I am pretty sure I felt each and every single emotion.
Me, the hubs, and the kid. I am so lucky and grateful.

Now, I would be remiss if I didn't tout the virtues of the outstanding members of my relay for life team. These folks took time out of their lives to join me in raising funds and awareness in hopes of getting us one step closer to a world without cancer. They supported me during my treatment, and they support me's pretty amazing.


You know what the cherry on top of all of this is? This team, "The Self Checkouts", was awarded the Relay for Life Rookie Team of the Year award!! We showed up en masse, we had the best t-shirts, we walked and talked, we laughed (and cried), we participated in Jazzercise. We remembered those we lost, celebrated those who survived and each of us did our part in trying to raise awareness about doing breast self exams.

Now, there are a solid 50 more pictures I could post and at least 50,000 more words I could type here. But I'm not going to. Just know that this event was something I was looking forward to throughout the entire year of chemo, surgery, radiation, blood draws, blood transfusions, and countless doctors appointments. This was a thing I could focus on instead of worrying about whether I was going to die or live. Because that's the truth. It's a scary truth that you don't want to admit until it's all over, but there you go. I lived. I survived. I got my damned purple shirt.

Sunday, February 7, 2016

The One Where I Realize An Entire Year Has Passed

On February 5, 2015, I received the official news that I had cancer. I was at work when my doctor called me. There was no beating around the bush. She told me I had cancer and I should hang up the phone with her and call an oncologist immediately. I did not immediately call an oncologist, instead I called my husband. And then I walked across the hall and told my boss. And then I turned the corner and went to my friend's office and told her. I am pretty sure I smiled, laughed, and dropped the cancer bomb. I laughed because I didn't want to cry and didn't know what else to do. Because that's a totally normal thing.

February 5th is my baby brother's birthday. I remember feeling horrified that this was happening on his b-day. I contemplated putting off telling him by a day so it wouldn't ruin his birthday. Now, I know that is kind of presumptuous and a bit conceited to assume that this would ruin his birthday, but I just didn't want to risk it. I remember calling my dad and being more preoccupied with figuring out if I should say anything or wait, than actually telling my dad I had cancer. I guess we fixate on weird stuff when we are stressed out. (In case you're wondering, I did tell my brother on his birthday. He doesn't seem traumatized and he still speaks to me, so I think we're okay. We even texted back and forth to make plans for a birthday dinner this year. Dessert and all.)

Here we are a while back at a Bulls vs. Mavericks pre-season game. Much fun was had by all. 
So, it's been one year since this whole debacle started. Wow. I feel like everything has changed and nothing has changed. It's an odd combination of feeling like it took me forever to get here and that it all happened in the blink of an eye. A very odd feeling and even more odd that I struggle so hard to find the words to describe it. Be prepared for a meandering post as I try really hard to get to the point...

Fuck. I survived. I had two huge tumors and now I don't. I am still alive and hearty, healthy, and hale. Please understand, it's not that I feel guilty and I am not sitting here wondering "why did it all work out for me and not those other cancer patients". I am smart enough and rational enough to understand the nuances of modern medicine, science, and sickness.  It's just that there are days where the enormity of it all hits me, right in chest. My heart hurts a little, my breathing gets a bit accelerated, and I get a little light headed. When I fully absorb what happened, it sort of freaks me out. Which is kind of stupid considering it's all done. I am cancer free. I beat cancer. I survived. So why am I freaking out on a random Friday afternoon? I dunno. Maybe all of those days where I just put one foot in front of the other, focused on one small piece at a time, plowed ahead and refused to be anything but positive and optimistic and certain that it would all work out finally caught up to me? Maybe my subconscious is finally cracking open just the tiniest bit and letting me see all of the fears I buried way down deep?

It's been a whole entire year. How do I feel about that? Like I said, some days the enormity of it all grabs me by the throat and I panic all over again. But mostly, I feel good. Really good. I feel like I have a much better sense of what is worth arguing about, and what is worth letting go. I feel like I search even deeper for the positives. I am trying so much harder to tell people what they mean to me. I am freer with compliments and gratitude. I want to take advantage of every opportunity in front of me. I am trying really hard to make sure I'm not raining on anyone's parade. I feel really good and I want everyone around me to feel really good.

I feel good emotionally AND physically. I joined the YMCA so I can work out and get my strength and endurance back. I got a Fitbit (thanks, Mom!) to make sure I keep moving and don't get too sedentary (let me know if you wanna be Fitbit friends - or whatever the cool kids call it). I've cut waaaaaay back on my caffeine intake (decaf coffee, more hot tea, little to no soda). More fruits and less Little Debbie.
Check out my nifty compression sleeves. From the right distance it looks like I am super tough and have these bad-ass tattoos. FYI - these guys help keep me from getting lymphedema, in case you were wondering. And yes, I did punch  myself in the face while trying to put them on the first time. It's cool. I'm fine.

That contraption right there? I have no idea what it is called but when I use it - it makes muscles in my chest area flex that I didn't know I had. I have a love/hate relationship with it. 
Oh, and another thing. A friend of mind messaged me recently asking if I had any idea about what I wanted to do with my wig now that I'm no longer using it. I told her that I had planned on donating it to the local cancer center, but just hadn't done it yet. That wig really did help me get through a rough spot - I was surprised at how much more confident I felt with it on and I wanted someone else to have that same experience with no worries about the cost associated with purchasing a wig (they can be kind of pricey). Turns out my friend had a friend who needed a wig. While it broke my heart that there was a reason to pass it along, I was more than happy to do so. What surprised me most about this was the little touch of sadness I felt about letting the wig go. It really was like a security blanket and I had a brief 10 minutes where I was truly sad about saying goodbye to Samantha. (The style of wig was called "Bewitched". Of course I named the wig Samantha. Duh.) I mean, don't misunderstand, I was 95% happy to be helping someone out by giving them the wig to use, but there was absolutely that 5% of sadness. Very weird, but that's the truth.

Why yes. I did have a Raquel Welch wig. 

Me having my last moment with Samantha. 

In retrospect, letting go of the wig was kind of a nice way to sad goodbye to the cancer and all of the horseshit that came with it. A nice way to physically let go, you know? Symbolic in a way. Which is a good thing. I want to let go, but I refuse to forget. This process could have easily been overwhelming and could have sent me into a depressive downward spiral. But it wasn't and I didn't thanks to my wide and deep pool of friends and family. I am learning to let go of the lingering fear and anxiety, but I will not forget what I went through. I think I have accepted my physical scars, and am working through the emotional ones. (Gotta stop waiting for the metaphorical "other shoe" to drop.)

This process showed me that I wasn't the weenie I thought I was and that it's okay to depend on other people and ask for help every once in a while. This process made me open my eyes and see the value in things that I was absolutely taking for granted - - and it's made me see that despite how good I had it before, I was missing out on so much more.

Wow. Yes. It's been a whole year. I am still a little shocked that all of this happened, but I am so grateful and relieved and awed that everything worked out the way it did. Guys, I did it. I beat cancer. Holy crap. Now, I just need to figure out how to 1) use the grill properly and 2) not burn bacon...I can beat cancer, but apparently cooking certain meats is outside of my skill set.

Saturday, January 9, 2016

The one about the last surgery (It's finally "ovar-y"!)

Okay, when we last chatted I had just finished radiation and I told you that the last step in my cancer treatment plan was to have my ovaries and fallopian tubes taken out. Well, on December 28th, I was able to check that off of the to-do list.

Of course there was a prediction of a terrible snow storm to hit that day. Because why not add a little extra stress. Sure. To do my part in thwarting the snow, I went grocery shopping the night before and had my husband get the snow shovel out and make sure the snow blower was working. (It's the same logic as washing your car to make sure it rains.) Boom. No snow storm.

If you've been following along you already know how much I hate needles and the worst part of surgery for me is getting the IV. I really dislike that portion of the show. But, when we parked in the hospital garage, I unbuckled my seat belt and saw this little graffiti gem:

"It'll Be Okay." Thanks, stranger. Much appreciated. 
I wish I could accurately express just how much this made me feel better. It's true, I believe in things like ghosts, fate, and signs - - and so this really did calm me down and make me believe it would be okay. 

Once again, each nurse I met during this surgery day was awesome. Friendly, smart, efficient, and caring. I am still not sure how I got so lucky, but I'm going to do everything I can to keep putting good vibes out to the world to compensate for my good fortune.

Anyway, they came and got me a little early for surgery because things were moving quicker than expected. So, off I went at about 10:45am. Getting your ovaries and tubes out can be done laparoscopically and takes about 30-45 minutes. I got three tiny little incisions: one in my belly button and two on each side. The one in my belly button seems a bit bigger, and the two others are no bigger than the nail on my pinky finger. 

Tiny little incisions. You can barely see 'em! 

This is an outpatient procedure so I was home and in my own bed by 2pm. Yes, I was a little sore and tender for a day or two, but not bad. The worst part of this whole procedure was the leftover gas in my body afterwards. The doctor inflates you with gas to move some of your other organs out of the way, and some of that gas hangs out in your body for a day or so until you burp it out or your body absorbs it naturally. I had these pains that felt like the stitch you get in your side after running, and a pain in my shoulder when I moved a certain way. It took about two days for that to go away. 

Surgery was done on Monday the 28th and on Thursday the 31st, I went to my cousins house to play cards for New Year's Eve. I took my kiddo shopping that Friday to spend her Christmas money. Went that Saturday to my baby brother's basketball game. Seriously, the recovery time was super short. 

Like I said at the beginning of this post - - this was the last item on my cancer treatment to-do list. No ovaries = no ovarian cancer. One less thing to worry about, right? Right. It feels good. So, if that was the last big thing I needed to do, what's next? Well, I'll have a few remaining sessions with my physical therapist (technically, she's an OTD, OTR/L, and CLT -- occupational therapist and certified lymphedema therapist, in case you were wondering), a follow-up with my oncologist in March, a follow-up with my radiation oncologist in March, and then just regular check ups thereafter. 

Guys, what am I gonna do with all of this reclaimed free time!?! I'll tell you what I'm gonna do - - I'm gonna enjoy it. I'm gonna laugh and smile and gleefully hop back into the driver's seat of my life again. 

Oh, and just as a reminder for you ladies...

It's January. Why don't you make sure you have your mammogram scheduled. Also, go ahead and schedule reminders for you monthly breast self exams while you're at it.

Thursday, December 17, 2015

The one with radiation, but no super powers

Well, the next-to-last piece of my cancer treatment puzzle was radiation. I did 33 sessions of this. Radiation took place every day, Monday through Friday. Despite getting zapped 33 times with fancy electrons, x-rays, gamma rays, and whatever -- no super powers.

I found this meme on the intertubes. The typos are kind of killing me on the inside, but you get the point. 

Really, radiation wasn't all that bad. Especially when I compare it to chemo and surgery. No nausea, no hair loss, no bone aches. The main thing I felt was tired. Not every single day, and not beginning with the first session. It took a little while to build up, but I'd say after the first week and a half I could feel myself starting to drag a little bit. Then about every three or four days, I would just be totally exhausted. So wiped out that I would fall asleep at 7pm and stay asleep until my alarm went off for work the next day. Because of this, I'm so glad that I scheduled my appointments in the afternoon at 3:45pm. If it was just radiation, I could be in and out in 30 mins. Once a week I had to do x-rays and that added another 15 minutes. Now, 30-45 minutes doesn't seem so long, but when you are laying perfectly still with your arms above your head it can seem like forever. And there was no clock in the room, so I would resort to counting the number of songs that played and estimated how much time had passed. What I appreciated more than anything was that the radiation therapists had good taste in music and changed it up each day. 

All things considered, when compared to chemo treatment days, it wasn't too bad of an experience that's for sure. So, let me try to describe how all of this worked, step-by-step. 

My very first appointment consisted of a full body scan, getting all of my planes marked, and tattoos (yes, I said tattoos). They sent me through a scanner (the tube kind) and they drew all over my chest with Sharpie. The radiation techs were making sure that they could set up my treatment plan to the exact specifications necessary (kind of like programming a CNC machine). After the scanning and the drawing, they gave me 5 or 6 little tattooed dots - - some right down the middle of my chest and one on each side. These little dots are black light sensitive ink injected just under my skin. That's right. I glow under black light. I am my own version of Iron Man with my tiny glowing arc reactor dots. These glowing dots allow the radiation techs to quickly line me up in the exact same spot each day. I learned that radiation is a pretty exact science. 

My first session of radiation was on October 15, 2015. Just a little over one month after my double-mastectomy and reconstruction. Here is what one of the two radiation rooms looked like: 

Here's the radiation room. That dome like ceiling actually has little blinking star lights that look like outer space. It has a purplish pink light and then the twinkle stars when it is turned on. Then I laid on that slab, my legs went over the pillow, and then they adjusted the table to the right height and position. Then that star ship Enterprise looking thing can rotate all of the way around the slab to do both x-rays and administer the radiation treatment.

Now, in my case, I had to take my top off and wear a hospital gown. This is probably because the radiation therapists had to regularly line me up to a very specific set of measurements and regularly draw on me with Sharpies. I got to leave everything on from the waist down. Kinda strange to be wearing your pants and boots paired with a hospital gown, but oh well.

Here's the little room where you change into your gown. There are little lockers outside to put all of your stuff. You can keep all of your jewelry on, and your glasses, and your shoes.

Seriously. I will not miss those gowns. I mean, I am no fashionista, but even I know how terrible they are.  

Now, I gotta tell you, I was definitely worried about the damage that radiation could do. My radiation oncologist told me that he wanted to see my skin turn a little reddish pink. That didn't seem so bad,  but there was a chance that I could get a sunburn of sorts. There was a chance that it could have been painful. That I might need a prescription for lotion with aloe and lidocaine. I was worried, so I was really diligent in following doctor's orders and applying a good, heavy lotion to my skin each morning. I also made sure that I was drinking plenty of water each day. I wanted to make sure my skin stayed hydrated and pliable. During this time I continued to see my physical therapist who is also a lymphedema specialist. She helped me address any issues I had with cording (Remember I mentioned cords last time? The hardened "strings" of lymphatic fluid that need to be broken up?). Each session of radiation was a fresh trauma to an already sensitive and damaged area. When I would see her, she would have me run through the exercises that I was also doing at home, then work on any cords, and try to monitor my incision areas to see if I was developing any noticeable scar tissue under the skin. It was important to make sure that I didn't get a build up of scar tissue that could glob up and push on my implants. Again, I count myself lucky that I really didn't have any terrible side effects. No burns, no sores. Just a few tan lines and some peeling skin that looked like reverse freckles, see:

This is my next-to-last day of treatment. You can see where some of my skin is starting to peel.

You can see here that I definitely got a funky tan from the radiation, but no burns and no open sores. Thanks Eucerin lotion!!

After 33 sessions of treatment. I was done. On my very last day, my friends and co-workers gave me quite the surprise. They threw me a "happy last day of radiation" party. There was cake and t-shirts and music and laughter and it was great. That group of folks have been wonderful. They have been so patient and understanding and caring. I really hit the jackpot there.

They understand my deep love of good puns. THIS IS THE BEST CAKE EVER!

Oh, and did I mention that they made t-shirts with my face on them and they all wore 'em to my party? (This is my husband, not a co-worker. I can plaster his picture all over the interwebs without permission. Didn't want to do that to my co-workers.)
I showed up to my appointment that afternoon with a smile on my face and gratitude in my heart. I really didn't care that they were running late. I really didn't care that I sat in the waiting room for almost an hour. I was just so glad that it was my last day and I was eager to give the radiation therapists the thank you gift I put together for them. (5 mixed-tape CDs to add to their stash of music. As I mentioned earlier, it is really nice to have music playing while you're laying on that table. I can only imagine how many times those folks have heard the same songs over and over. Seemed like the very least I could do was to give them some new tunes.)

Another fun surprise that day was my radiation diploma. I graduated and this is my official certificate of completion. How great is this? So thoughtful and caring and it made me smile.
I even got a diploma for completing radiation. Those radiation therapists were fantastic.
Again, I am so grateful for my team of ridiculously awesome doctors and medical professionals. They did such a great job of giving me the treatment I needed to ensure that I kick the cancer's ass and keep away for a good long while, ideally, forever. They made sure I was well informed and well cared for. You really can't ask for more than that.

So, what's next? Well, I'll keep going to my physical therapist for a while so she can keep working on those dang cords that keep popping up and to massage away some small areas of scar tissue under the skin of my incision lines. Then just one more small, outpatient procedure. It is highly recommended (read: as close to a demand as you can get from your doctor) that I have my ovaries and fallopian tubes removed. Because I tested positive for BRCA, I have an increased risk for ovarian cancer. No ovaries = no ovarian cancer. Since I've definitely hit my deductible for the year, there's no time like the present to get that done. More on that later, maybe. Otherwise, it's just a matter of staying healthy. My family joined the local YMCA so I can keep active and regain my strength, flexibility, and endurance (plus it'll be fun to go to the Y as a family and swim and play basketball and stuff), and then I'll meet with my oncologist on Christmas eve to kind of recap the year and figure out a plan going forward.

So close to being able to say "I'm done with all of my cancer treatments". I'm ready for that day. And I'm still so stupidly grateful for all of the wonderful doctors, family, and friends who have been there for me from the get go. I'm ready to start giving back and sharing the light and love I've been so lucky to receive.

SO. CLOSE. TO. BEING. DONE.  Ahhhhhhh!!!!

Again, thanks to the internet, we have jokes like this.