Day 712 (I think). Life after cancer.

When you're diagnosed with cancer, you expect the most difficult part to be the fight.  The chemotherapy and all the bad things that come with it.  You expect that as soon as you hear the "remission" word, everything will go back to normal.

No one ever tells you that remission is the hardest part of cancer.

I've been putting off saying anything publicly.  But as I sit here after crying for the past half hour, my eyes swollen and so blurry I can barely read what I'm typing, I realize it's time for me to post about it.

My last chemotherapy session was just over 17 months ago.  Looking back, I had a fairly easy chemo experience, at least compared to what others go through.  I was rarely sick, and although I had lost all my hair, it didn't take much to transform myself into a somewhat normal looking human being.  

As I walked out of the treatment center for the last time, I thought I had left cancer in the dust.  I was healthy and ready to get back to my normal life.

No one ever told me that there would be no "normal" after cancer.

The first struggle I had during remission was my frustration with my hair growth, or lack thereof.  I hated that I still looked sick even though I felt completely fine.  I invested in a couple very nice, custom wigs, and while they looked incredible, it still wasn't the same.  I was constantly touching the lace to make sure the wig hadn't slipped and was exposing my natural hairline or the cap underneath. I took forever during each trip to the bathroom, because I was re-pinning the sides to make sure it didn't move.  

I remember one time I was with a singer friend of mine after one of his shows.  I was wearing my wig with a Seahawks stocking cap over the top, because it was January in Chicago.  At one point in our conversation, Tyler, being an avid fan of Seattle's rival team, jokingly said "Erin, I hate that fucking hat" and reached over to rip my stocking cap off my head.  I panicked, thinking he might accidentally take my wig off with it. I latched onto that thing with both hands, and would't let him take it.

I'll never forget the looks on the faces of my friends.  From the girls, a look of panic.  They knew about the wig and what could have happened.  Tyler's look was one of confusion, probably wondering why I was so possessive over that damn hat.  He still doesn't know that I had cancer or that I wore a wig.  I never told him, because I never wanted to get that look of pity from him, the one that flashes across everyone's face when they find out.

The pity look is the worst.  That look crushes me.  I don't like people feeling sorry for me or looking at me like I'm broken.  I got so sick of seeing that look cross peoples' faces when they were talking to me, and that's part of the reason I immediately put on this facade and act like I'm strong.  I want to wash the look of pity off their face, and pretending that I'm fine and that everything is rainbows and unicorns usually does the trick.

Everything is far from rainbows and unicorns, though.  I've been in remission for 17 months, and I still can't escape cancer.  

It stares back at me every time I look in the mirror.  It's in my ugly, thin hair that won't grow and still randomly falls out.  It's in my thin eyebrows that I still have to pencil in every day.  It's in the fifty extra pounds that I put on during chemo that I still haven't lost.   It's in the huge scar on my chest where my port was and in the dark marks on my arm where they're scarred from the Bleomycin.   

I still feel it, too.  I feel it when the insomnia is still so bad, even Ambien can't knock me out.  I feel it when my legs swell up and my feet ache.  I feel it in my hips, when they're stiff and pop and feel like they belong to an elderly woman.  I feel it when I itch so bad, I make myself bleed from scratching.  The one place I can't feel it is in my toes, because those are still numb from the neuropathy.  

And I'm always in constant fear that the cancer will come back.  I don't think that fear will ever go away, either.  So many people I met are relapsing, and I can't help but wonder if my time is coming.  Especially with having had NLPHL, which has a really high relapse rate.  I think about it constantly, and it's made it really hard to move on with the rest of my life.  Like, how am I supposed to date, fall in love, get married if I'm a ticking time bomb?  How do I burden someone else with that?

Ugh, dating.  That's a whole issue in itself.  It's been impossible.  I've been on one date since I've been in remission.  ONE.  And it was over a year ago.  As soon as I told that guy that I was a recent cancer survivor, he quit talking to me. That was a huge blow to my already-low self esteem.  I don't know how to date after having cancer.  I also don't know when to tell guys that I had cancer.  If I tell them too soon, they'll get freaked out and leave.  If I wait too long, they'll think I'm hiding it.  I worry that once they find out, they'll bail like that first guy.  Because who would want to date me when they could pick someone else who doesn't have all this shit going on?  I feel like my online dating profile should read "Fat girl with shitty hair who may not be able to have kids looking for single, decent guy who doesn't mind a little baggage."

I know what you're thinking - I need to work on me before I worry about someone else.  But how do I work on me when I don't even know who I am anymore?  I'm not the same Erin I was before I was diagnosed.  I feel like a completely different person.  Erin died when she was diagnosed with cancer two years ago, and I'm this new, weird, reborn Erin who has no idea how to function.

I just want to be me again.

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It's taken about 3 times longer than it should have to get this far, because I keep taking breaks to cry.  I haven't felt this upset about everything in a long time.  I'm not depressed, and no one has to worry about my mental health or anything.  Everyone has their struggles in life, whether it's their job, money, relationship.  This just happens to be my struggle.  I'm not usually one to air all my dirty laundry, but I don't feel like I have anyone in my life that I can talk to that would understand.  Friends and family can be supportive, but no one can truly understand the post-cancer battle unless you've personally been through it.  Keeping my feelings bottled up clearly wasn't working, so this was at least a way to get things off my chest.

I know that there are other cancer survivors out there who are going through similar problems.  So if you're reading this, know that you're not alone.

Day 434. Long time, no update.

Today was Thanksgiving, and I was taking some time to reflect on everything that's happened since last Thanksgiving, and I realized it has been over five months since I last updated this.  Man, I'm horrible at this whole blogging thing!

Last time I checked in, I had just gotten back from my trip to Nashville.  I'd mentioned that just before my trip, I started having issues with hives.  That continued after I got home.  I think part of me will always be paranoid about the cancer coming back. But the hives really worried me, because skin issues were part of my pre-diagnosis symptoms.  They worried my oncologist too, because Dr. Blau had me go get a PET scan three months before I was scheduled to.  Luckily, my scan came back completely clear.  Dr. Blau thinks my skin issues are a lasting side effect from the Bleomycin.  That drug is known to cause skin problems, plus it also tends to stay in the system for a long time.  I know Bleo can cause lung issues if you are given oxygen, even years after being administered.  So it makes sense that the skin issues could last a long time, too.  It's obviously very reassuring that it's not being caused by a relapse, but it's still frustrating to be so itchy all the time!

I'm also still dealing with neuropathy.  It's mostly in my feet (half my toes are still numb), but my fingers and hands will "fall asleep" easily.  Most of the time I don't notice it, since I'm used to it by now.  But my feet become really bad when I stand for a long period of time.  They swell really easily, and ache like crazy, to the point where I have to go lay down for a while.

I've been struggling a lot lately with the way I look now, my short hair being the worst of it.  It's growing, but it seems like it's taking forever.  It's about 3-4 inches long now but it's in dire need of a trim, and I'm doing everything I can to avoid cutting it.  I feel like by trimming it, I'd be taking a step back.  So instead, it's at a very awkward mullet stage, and I hate it.  If you haven't seen my pre-cancer pictures, I used to have the most gorgeous, waist-length hair.  I miss it like crazy.  So I decided to invest in a to-die-for human hair wig.  I had a couple human hair wigs already, but they were shorter, and I hate the cut and color of them.  I wanted a "Victoria's Secret Angel" hairstyle.  I wanted goddess hair.  So I ordered a custom wig from a shop on Etsy.  I was able to completely customize it, and it's gorrrrrrrgeous!

I'm so in love with it!  The cap is full lace, and ended up being too big.  But I found a way to make it work (if you have the same problem, check out WiGrip!), and it looks so natural.  I get so many compliments on my "hair".  And if you've ever lost your hair to chemotherapy, you know that warm and fuzzy feeling you get when someone compliments your wig.  :)

(In case you're interested, the Etsy shop I ordered it from is "Gardeaux Wigs" and the owner's name is Rachel.  She was fantastic throughout the whole process, and I highly recommend her!)

On the bright side, my natural hair is now long enough to pin the front back!  :)

We just had some major changes at work, and I'm happy to report that I've had no issues with "chemo brain"!  We switched CAD (computer-aided dispatch) systems, so I basically had to relearn how to do my entire job.  But I've had no memory issues, thank goodness.  I've been able to retain everything and haven't had a problem.  I'm lucky, because a lot of survivors I know have had issues with "chemo brain," almost to the point where it's like a mild form of dementia.

I'm still traveling and going to concerts, and doing the things I used to love before being diagnosed.  A couple weeks ago, I went on the Florida Georgia Line cruise.  If you read my earlier blog posts, you know that this was the cruise that I missed last year because I started chemo just a couple weeks prior.  I made it a goal to go on this year's sailing, and booked it while I was still going through chemo.  Going on this year's cruise was my giant "screw you" to cancer, and I'm so happy to report that the trip happened.  I did it.  I survived and I made it onboard.

Last year, people were wearing purple and honoring me because I couldn't be there.  This year, people were hugging me and congratulating me because I finally made it.  People I'd never even met before came up to me and told me what an inspiration I was to them.  It was a very emotional four days, but I had an incredible time.

One of the most memorable moments of the cruise was my meet and greet with Florida Georgia Line.  The band had been instructed to shake people's hands since there was such limited time.  When Brian (one of the members of the duo) found out who I was, he wrapped me in the biggest bear hug and told me how happy he was that I was able to make it this year.  This is the same guy who wore a purple Hodgkin's awareness bracelet in my honor on the last cruise.

After the meet and greet was over, the realization of what had just happened hit me.  I started crying as my friends and I were leaving the theater.  I'm sure everyone around us thought I was tearing up because I'd just met the band, but it was so much more than that.

Exactly one year prior, my friends had stood with Florida Georgia Line for their picture.  Instead of being there with them, I was at home battling cancer, and they had a photo of me to hold.  I was a face on a piece of paper.  This time, I was cancer-free and standing there where I should have been the year before.  Even now, I'm getting emotional just thinking about what that moment meant to me.

I have a video that I put together of my entire cruise experience, so I'll post that in a separate post.

Last weekend, I flew to Boise to meet up with a friend to go to a concert.  We saw a couple of artists from the cruise - Dustin Lynch and Chris Lane - as well as another one of my favorite singers, Tyler Rich.  It was the best concert I've seen in a long time, and I really enjoyed myself.  So much so that I decided to go see the same tour in Chicago in January with another friend.

I have a couple friends coming to visit tomorrow from California and Utah, so I'm excited to spend the weekend with them and play tourist in Seattle.  Hanging out in the city never gets old, and I'm fortunate to live in a place that I love so much.  Brie and I are also going to the Seahawks game on Sunday.  Both friends are then going back home for a couple days, then we're all meeting back up in Las Vegas on Thursday.  We're seeing Sam Hunt in concert, then spending a couple of days playing in Sin City.  I'm also planning a trip to San Francisco in February to visit a friend.  And of course I'm headed back to Nashville in June for CMA Fest.  :)

You probably think I'm crazy for going on so many trips, but I'm having such a fun time going on my little adventures!  A year ago I was banned from traveling, and missed out on so many things.  So now I'm making up for last time.  It sounds corny, but one thing that having cancer taught me is that I really do want to live my life to the fullest and not have any regrets.  

Oh, I almost forgot!  I'm getting my port removed on Monday!  I'm not sure how I could forget to mention that, since it's such a huge deal, haha.  This is the final step to getting back to normal.  No more foreign object in my chest!  I'll make sure I remember to blog about my experience getting it taken out.

Thanks for reading!  Catch you in my next post (which hopefully won't be half a year from now)!

XOXO

Day 278. Video - CMA Fest.

I thought I would share a video on here that I made with pictures and video clips from my "celebration vacation" to Nashville for CMA Fest.  Enjoy!

Day 277. I'm still here! :)

Holy lack of updates, Batman!  I can't believe it's been almost 100 days since I last posted.  I'm the worst blogger on the planet.  Sorry, guys.

I finished chemo on March 25th!  It was the most incredible feeling knowing that I was done with that portion of my journey.

Three days after finishing chemo, I went to see Dan + Shay in Seattle with a friend of mine.  It was the first concert I went to since being diagnosed, and it was amazing.  It felt like I was finally getting my life back, and it was the first thing I was able to do that resembled my life before cancer.  I'm not one to ever take signs with me to shows, but I felt like I had to for this one.  I made a sign saying I'd just finished chemo and was celebrating by being there.  I held it up during a song late in the set, and Dan noticed it immediately and loved it.  He even gave me his guitar pick after the song finished.

I had the opportunity to meet Dan + Shay after the show, and they were very sweet.  Dan recognized me and asked me to get my poster back out and hold it for a picture since we were celebrating my remission.

If you ever have the opportunity to see Dan + Shay live, I'd definitely recommend it!  They're crazy talented.

I went back to work a week after I finished chemo, on April 1st.  OH MY GOODNESS.  You have no idea how glad I was to go back.  I'd gone stir crazy being off work.  I hardly did anything in the five months I was off, other than be lazy at home and go to chemo.  I rarely went anywhere or saw anyone.  So I was very glad to have something to do again!

My first night back at work!

A couple of weeks after my last chemo, I started having problems with my lungs.  It hurt to breathe in deeply, and I became short of breath while doing very easy tasks - walking up stairs, folding laundry, etc.  I'd known that one of the chemo drugs I received (Bleomycin) could cause lung toxicity, but I was surprised that it would show up AFTER I finished chemo.  I ended up having to go to the emergency room on April 12th to make sure that it wasn't a blood clot in my lungs or pneumonia.  They did show some lung damage, but said it was most likely from the bleomycin.  I was able to go home, but I had to miss the Garth Brooks concert I was supposed to go to the next day.  I still wasn't able to walk more than a few steps without getting completely winded.

Stuck in the ER.

I was supposed to start radiation when the lung issues started, and went to a couple consultation appointments.  I even got my radiation tattoos (pink dots that will show up under a black light, in order to line up the machine). But then my oncologist decided to postpone radiation until my lung issues were sorted out.  To this day, I still haven't gotten radiation.  I'm not sure if we're still going to do it.  I have an appointment with my oncologist tomorrow, so I'll find out then.  However, I'm no longer having issues with my lungs.  I'm no longer short of breath or in pain, and they seem to have gone back to normal.

The radiation area mapped out on my chest with Sharpie before it was postponed.

In late April, a couple weeks after returning back to work, the police squad that was working all came into the comm center.  I figured something had to be up, because the whole squad never comes in at once, but I didn't know what they would have been there for.  Turns out they were there to present me with an award - the police union had voted me as dispatcher of the year for 2014!  It was the second year in a row that I'd received the award, and this one was definitely the most special of the two.  I take pride in being a good dispatcher, and it's nice to know that my efforts to do well at my job don't go unnoticed.  Especially when I hadn't been at work in a few months.

I tell you what - if I thought dating was difficult before cancer, it's ten times harder after having cancer, haha.  I've been on a couple dates since being in remission, but I've struggled with it.  I don't know when it's appropriate to bring up what I've been through, or how to talk about it without being awkward.  And since I still wear a wig when I go out, I feel like I'm obligated to say something before they find out on their own.  It's hard.  My self-confidence has definitely taken a hit.  It doesn't help that I gained back nearly all the weight I'd lost prior to my diagnosis, so I feel like a whale on top of having boy hair.  I know it will get easier.  I'm just anxious to get back to my pre-cancer life, and I know that will take a while.

In late May, I broke out in hives like crazy.  It started on my legs and under my arms and just spread.  Within a week, my entire body was covered.  And nothing helped - allergy medicine, Prednisone, nothing.  It was miserable.  I itched so bad.  Eventually the hives mostly went away, but I'm still dealing with breakouts on my hands and what appears to be heat rash on my legs and torso.  I guess it's not uncommon to break out in hives around the two-month post-chemo mark, because it takes that long for the chemo to get out of your system and some peoples' bodies just freak out.  I just hope it goes away soon.

I'm also dealing with neuropathy in my feet.  Several of my toes are numb, as well as a portion of my heels.  I'm hoping to find out more about this tomorrow when I talk to my oncologist.  I don't even know if it will ever go away.

The first week of June, I travelled to Tennessee for my "celebration vacation."  It was a trip that I'd had planned for over a year that turned into an "I'm done with cancer!" trip.  I went to Memphis for a few days to visit my aunt and uncle that live there, then met up with friends and went to Nashville for CMA Fest.  We went to the CMT Music Awards, attended some private fan parties, and went to LP Field for the big concerts each night.  

Loaded up with tech before our tour at Graceland.

                                     

With Charles Esten, who plays Deacon on "Nashville," on the red carpet before the CMT Music Awards.

I was on TV!

At the CMT Music Awards.

Luke Bryan performing at his private fan club party.

Front row for Dustin Lynch on the Riverfront Stage.

With Chris Young.

Outside of Fan Fair X.

Front row for Chris Young's performance on the Close Up Stage.

Dan + Shay performing at their private fan party.

With Dustin Lynch.

Brett Eldredge performing at his private fan party.

Meeting Wynonna.

Our group, plus a couple of photobombers.

With Brett Eldredge.

Front row for Eric Church at LP Field.

At the iconic Nashville mural.

Front row for Dierks Bentley at LP Field.

Needless to say, it was an incredible trip.  Photos can't even begin to show the amount of fun we had and the experiences we got to have.  But they're ones we'll have again - we've already booked the condo for CMA Fest next year!  :)

Oh, and I haven't posted a hair status photo in a while!  So here you go:

That picture was taken while I was in Memphis.  It's not to the point that I can really style it at all, but it's getting there!  It also seems to be growing in a bit darker than it was before chemo.  The grays are coming back though, haha.

I think I've covered everything that's been going on.  I'll try to keep update this way more often than I have been.

Take care, readers!  Xoxo.

Day 178. Update on errythang.

Well, hello there!  I figured it was time for another actual update on my life and not just a video.

I had my 11th chemo treatment this past week.  Yes, 11!  Which means I only have one left!  I'm almost there!

One of my coworkers (a fellow cancer survivor) made this beautiful quilt for me!

My last treatment is scheduled for the 25th.  I'll then have a PET scan in mid- to late-April to see if the cancer is gone.  Dr. Blau will then present my case to the tumor board, and they'll decide if I have to have radiation.  I'm hoping I don't have to since I don't have bulky disease, but it's still a possibility.  I'm also planning on going back to work in about a month.

I'm still lucking out in the side effect department.  I have very little nausea, and no mouth sores.  I still have the funky taste buds the week after chemo.  My appetite has become crazy, though.  I'm hungry all the time.  I'll eat something, and then an hour later my stomach will be growling.  It's very frustrating.  Especially when everything tastes horrible, and nothing sounds appetizing.

What's really strange is that a lot of the side effects I have come and go.  The insomnia is pretty much gone, and last week I was dealing with numbness in my left hand.  Half my hand was numb for a few days.  But that has since resolved itself.  It's weird.

I'm done giving myself shots!  Dr. Blau made me go 6 weeks on them instead of the original month, but the 6 week mark has now passed.

My hair has been growing like crazy.  It's so odd.  I figured my hair would completely fall out, and wouldn't come back until after I'm done with treatment.  But it's grown a lot since I had it buzzed the last time.  My eyebrows and eyelashes are also starting to grow back.  And my leg hair!  It's really disheartening seeing leg hair after not having it for a few months, haha.

Speaking of hair, I got a "haircut" a few days ago, lol.  My original Zara wig was getting pretty haggard looking, so I took it to my hairstylist to resurrect it.  It turned out so cute!  The shorter style will be really fun to rock during the spring and summer while my hair grows back.

I've been spending a lot of time looking at things to do in Tennessee and at travel videos.  My trip to CMA Fest is getting so close!  Less than three months!  I can't wait to celebrate being done with treatment with my friends in one of my favorite places on the planet.  I've actually decided to make my trip longer than I originally planned, so I can go visit my aunt and uncle that live in Memphis.  So I'll be there for about 4 days, then my friends and I will drive to Nashville and stay there for 8 days.  I'm so excited!  I'm probably driving my friends insane with the messages I send them about it (sorry, guys!), but it's nice to have something to look forward to.  

And I need some music in my life.  For those of you who may not know, going to concerts is kind of my thing.  I love experiencing live music.  And I haven't been able to go to a show since my diagnosis.  I'm so excited to start going to some again!  I'm going to celebrate finishing chemo by going to the Dan + Shay show in Seattle, then next month I'm going down to Portland to see Garth Brooks.  Then in May, I have pit tickets for Luke Bryan.  Nothing like getting right back into my pre-cancer swing of things!  :)

Okay, I'm going to go watch the replay of the Mariners game from today and relax.  TEN DAYS, GUYS!  Ten days and I'm done!  :)

Day 171. Vlog: A day in the life of a chemo patient.

Hey everyone! I thought it would be helpful/interesting if I brought you with me on chemo day and showed you what my life is like. Hope you enjoy!

I'm posting this on my phone, so I can't embed the video. Just click on the link! :)

http://youtu.be/ss4lGXROYfQ

Day 167. Wig review.

Hey everyone!  I've gotten multiple requests to make a video about the wig that I wear, so that's what I've done!  Hope this covers everything you've been wondering about my "Zara"!  :)