Day 97. Transformation.

From Instagram:

This isn't your typical transformation picture, but I feel like I needed to post it. This is me, no filter, no smoke and mirrors. This is who I've become. Cancer has changed me, scarred me, bruised me, but it hasn't broken me. I'm a better person now than I was in the picture on the left. I'm stronger. I'm a warrior.

Day 94. Another insanely belated update! :)

Yes, yes, I know I've once again been slacking on my updates.  Erin fail!  But luckily, as far as side effects and that sort of thing goes, there isn't much to report!

Since my last entry, I've had two more chemo treatments.  I'm almost halfway done!

Here's #4:

Annnnd #5:

Like I said before, the side effects (or lack thereof) have been very kind to me the last month or so.  After my fourth chemo, I had my one night of nausea and I was done.  I had a little joint pain, but that was it.  My fifth chemo was this past Tuesday, and the nausea lasted a little longer, but it's very mild nausea.  Just an upset stomach most of the day, but no vomiting.  My taste buds are also still affected, but I may have figured out the reason for that - it's the same days that I would have had mouth sores following the chemo.  So sucking on the ice cubes must deaden them or something?  I'm not sure, but I'll absolutely take not being able to taste sugar over the mouth sores.  My jaw has also been sensitive, and hurts when I first bite down on something or take a drink.  I've also been a lot more fatigued this week.

I know it sounds weird to say, but I have been so lucky throughout this process.  My side effects are so minimal compared to what some people with Hodgkin's go through.  I know of people who vomit for days on end, or have open sores on their face from the chemo chemicals.  I'm very fortunate that I haven't had to deal with anything that severe, and I hope that I don't have to the rest of my journey.

I had a PET scan done last week following my first 2 cycles, and got the results this week.  GREAT NEWS!!!  The cancer is responding to chemo and has decreased in all of my lymph nodes.  My abdomen, spleen, and liver are also completely clear!  I'm so happy, I could cry.  In fact, I did shed a few tears when I found out.  I'm actually doing it.  I'm kicking cancer's ass!!  :)

My white blood cell count continues to be extremely low, but luckily it's been just high enough to still be able to do chemo.  Dr. Blau is worried about me getting an infection and not being able to fight it, so she decided to put me on a daily antibiotic, indefinitely.  I've also been having mood swings and getting agitated easily, so I've been put on an antidepressant.

On Thursday while I was napping, I must have slept with my neck kinked and woke up in a lot of pain where the catheter from my port goes up into my neck.  It was also really red around the old incision.  After a couple calls to the oncologist's office, I had to go into Tacoma to have a doppler ultrasound done to make sure I didn't have a blood clot.  Everything checked out okay, and I still have no idea what caused the pain, but for the most part it's back to normal now.

I got a new wig, and it's been a lot of fun trying out a new look!  A wig site that I like had a cyber Monday sale and everything was 40% off, so I decided to get one that I'd been eyeing for a while.  I love it!  I may even love it more than my human hair one.  It's such a cute style, and I love the color.  It looks so real, and I think I pull off the blonde okay.  :)

Earlier this week, I got to participate in the American Cancer Society's "Look Good, Feel Better" program.  It's a makeup and skincare workshop for cancer patients to help them combat the appearance-related side effects of their treatment.  They also do scarf tying demonstrations and have wigs for you to check out.  They give you a huge makeup kit to use and take home, free of charge.

Here's what was in my kit:

And me, afterward:  

Seriously, to all my fellow warriors - check this program out.  I had so much fun, and it was great to meet the other women who were fighting their own battles.  Go to lookgoodfeelbetter.org to find a workshop near you!

For most of you who know me, you know that doing makeup has always been a hobby (or obsession, haha) of mine.  While the workshop was fun and informative, I caught myself thinking a couple of times that I could teach a class like this.  So I'm thinking about doing a couple of video tutorials geared toward those fighting cancer - how to fill in or draw on your eyebrows, how to put on false eyelashes, the best products for dry skin, etc.  Is that something my fellow warriors would be interested in?  Let me know in a comment!

In non-cancer-related news, I got to meet my favorite football player!  Kam Chancellor was doing a toy drive in Renton last weekend, and I really just needed to get out of the house, so I went up there with a friend.  It was so cool to meet him and chat with him, plus it was for a great cause!

I'm bummed that I won't be in Arizona for the game tomorrow like I'd planned, but as long as the Seahawks win, I don't mind having to watch from home!  :)

I can't believe Christmas is only a few days away!  It really snuck up on me.  I haven't even started shopping yet!  Hopefully I'll feel up to doing it on Monday, and hopefully pretty much everyone is okay with getting gift cards!  :)

I'm signing off for the night - going to go watch an episode of The Real Housewives of Beverly Hills (no shame!) and hit the sack.  Ciao!

Day 73. Holy belated update, Batman!

Holy smokes, I've been so bad at updating this lately!  I've totally been slacking.  Time to remedy that!

Last time I checked in, my hair had started to fall out and I was contemplating shaving my head.  Well, that happened.  I had a little fun and put purple streaks in my hair for a few days, then buzzed it all off.  It was so thin and awful by that point, I was just ready for it to go.  No tears were shed.  It was almost a relief to have it gone.  Don't get me wrong, I miss my hair.  But it's my long, thick, pre-chemo hair that I miss.  Not the short, thin, gross hair that I had right before I shaved it.  Good riddance!

I've had my second and third chemo treatments since the last time I checked in.  For my second one, I drank a slurpie while the Adriamycin was going in.  That cut down on the mouth sores considerably, but I still got them.  I also still had stomach issues the following week, and ended up in the emergency room again.  

My third chemo treatment was last Tuesday, and they almost had to postpone it because my white blood cell count was so low.  They decided they were barely able to push forward with it, though.  During the Adriamycin drip, I sucked on ice cubes this time.  BINGO!  I ended up with zero mouth sores this time.  The ice cubes were definitely the key.  It was amazing not having to deal with the sores and being able to eat normal food in the days after chemo.  I also did not have stomach issues this time.  In fact, other than the few hours of nausea after chemo and a few random stomach cramps, I've had no bad side effects this go around.  (Knock on wood!)  

I have noticed, however, that my taste buds are really starting to be affected.  I don't consider that a "bad" side effect, but it's definitely something new to deal with.  Things just taste strange.  There are a couple types of soda I can no longer drink, including my beloved Diet Mountain Dew.  It tastes awful.  Most sugary things taste bland, and bottled water tastes like I have pennies in my mouth.

I'm really thankful that the mouth sores stayed away after this last treatment, because one of my good friends flew in from Utah for a visit, and it would have been awful trying to deal with any bad side effects while spending time with her.  We went to the Seahawks game last weekend, and we had a blast!  I'd been worried about going to the game with my WBC counts being so low, but it didn't end up being a problem.  My legs got tired from all the walking, but that was to be expected.  It's quite the hike to get up to the upper level seats!  The game itself was incredible, and the Hawks got a much-needed win!

After much thought, I've made the decision to not go back to work until I'm done with my treatment.  I'd hoped to continue working throughout this ordeal, but it's just not going to be possible.  Not because I don't feel up to it, because that's not the issue.  My white blood cell counts are the problem.  It's cold and flu season, and people always come to work while they're sick, and I just can't be confined in a room with them for 12 hours a day.  I can't risk it.  So I'm using up the rest of the time I have in my leave banks, then going on long-term disability until April.  I'm going to go absolutely stir crazy during my forced staycation, but it really is the best decision to stay home.

Being on leave from work meant that I was able to spend Thanksgiving with my family though, and I'm very thankful for that.  My brother was in town from Oregon, and my sister and brother-in-law came from Idaho to visit.  This was the first time I'd seen any of them since before my diagnosis, and it was so great to be able to spend time with them.  We had a great dinner with our parents, watched the big Seahawks/49ers game, and played Cards Against Humanity.  Such a great time!

Thanksgiving selfie!  Rocking a wig and Seahawks jersey.  :)

I have my fourth chemo treatment coming up on Tuesday, and I hope the side effects stay away like they have these past couple weeks!  It's been so nice!  After this treatment, I'll have a PET scan to see how much of the cancer has been slaughtered.  Hopefully it's mostly gone!

I'm going to go relax a bit before bed.  I promise I'll try to be better about updating this thing!  :)

Day 48. Going bald.

My hair started falling out last night.

I knew it was coming, but there's seriously nothing you can do to prepare yourself for what it's going to be like when it starts happening.

Yes, I know it's only hair.  Yes, I know it will grow back.  But until you've reached up to tuck your hair behind your ear and end up with a chunk of it in your hand, you don't know what it's like.  You don't know how traumatic it is.  It's horrifying.  

My plan was to hold onto my hair for as long as possible and see if it just thins a lot instead of falling out completely, but I don't know how much longer I can take this.  I keep finding hair on my shirt, and it was all over my pillow when I woke up.  It took me hours today to muster up the courage to take a shower.  I'm betting I throw in the towel and shave my head by the end of the week.

I was scheduled to have my second chemo treatment today, but my blood work results on Friday forced Dr. Blau to push it back a day.  My white blood cell count is literally zero.  The last chemo killed off too many good cells in my bone marrow, and my body can't fight off infection right now.  I can't have chemo when my count is that low, so we're going to try tomorrow.  Hopefully my count came up over the weekend!

I have to be up around 7am tomorrow, so I'm calling it an early night.  Ciao!

Day 44. Breakdown.

I've been trying to be positive this whole time. I really have. I've had a "just keep swimming" attitude the entire time, and I'll do just that. I'll totally keep swimming. But right now it feels like I'm treading water, just trying to stay above the surface.

I broke down today. I've only cried a handful of times since being told I have cancer, but today I lost it. Everything is catching up with me, and it's hard to deal with it all at once. I QWOP-ed in the parking lot of Walmart and almost fell on my face. My fingers are starting to go numb, and it's difficult to write. I've started getting hot flashes frequently, which means my eggs and any future children of mine are probably blowing up inside my body. My hair is going to start falling out any day. 

So while sitting at a stoplight, I put my face on my steering wheel and just started bawling. Thank goodness for tinted windows.

It's so much to process all at once. It's all stuff I expected to happen, but having an idea of what it will be like and it actually starting to happen are completely different, and it's overwhelming.

Sorry for the un-sunshiny post, but this is a cancer blog after all. Nothing about this is unicorns and rainbows. But every now and then I'm going to have days like today, and I have to do just what I plan on doing now - pushing through it. 

Tomorrow is a new day.

Day 43. First chemo session, then everything went to crap.

I'm still alive!  Sorry that I've been completely MIA.  It's been a rough week, to say the least.

I had my first chemo session last Monday (on day 34 of this journey).  I'd worked a half shift of overtime the night before and then driven out to my parents' house afterward to spend the rest of the night there.  Since my mom has agreed to be my chemo chauffeur throughout this whole experience, I'll just be staying out at her house the night before my treatments and on my post-chemo crummy days.  It's worked well so far, but more about that later.

My chemo session started bright and early, at 8:30am.  As someone who works night shift, any number with "am" at the end of it makes me cringe.  Waking up anytime before noon is awful.  I think I ended up getting about four hours of sleep.

I remember the first part of the infusion process well, but everything post-Benadryl is kind of a blur, so I'll try my best.  When I got in the infusion room, the first thing I did was step on the scale.  They use height and weight to calculate the amount of drugs given, so that was the first thing to get done.  After I chose a chair and got settled into a quiet spot in the corner, the nurse took my vitals and then hooked everything up to my port.  I'd put lidocaine on before I left home, so it was completely numb when they accessed (and by accessed, I mean stabbed with a huge needle) my port.  After everything was hooked up, they drew blood to make sure all my counts were high enough to continue (they were totally normal).

Then came the pre-chemotherapy cocktail.  First was a saline flush, then a dose of Aloxi (an anti-nausea medication).  Then was a triple combo of Benadryl, Dexamethasone (an anti-inflammatory steroid), and Pepcid.  Then came a dose of Emend (another anti-nausea medication).  They also kept an extra bag of Benadryl hanging, just in case it was needed.  Two of the chemo drugs I received  have a really high chance of a severe allergic reaction, so they gave me a lot more Benadryl this first session and had the extra on hand.  I didn't end up having a reaction though, so no need for the second bag!  :)

After the cocktail, I had my mom take a picture before the Benadryl knocked me out.  How awesome are my cowboy boot slippers?!  I got them in Texas a few years ago, and they're the comfiest slippers I've ever worn.  I think they might be a new chemo fashion necessity.  :)

I also had my mom get a picture of my fancy new blanket.  Go Hawks!  :)

The first chemo drug they gave me was Rituxan, one of the ones with a chance of an allergic reaction.  It also took the longest to administer - about 4 hours.  I slept through this one for the most part, thanks to the Benadryl.  I do remember being a tiny bit nauseous at one point, but very briefly.

After the Rituxan, I think they did the Bleomycin next.  That's the other one with a high allergy rate that can cause all sorts of problems.  I breezed through that one, although I don't remember how long it took for it to administer.  Adriamycin was next - they call this the "Red Devil."  It's the one that tends to cause mouth sores, so I'd expected to chew on ice chips while it was being administered (I'd read that chewing/eating something cold helps prevent the sores).  Turns out the infusion room didn't have any ice chips, so I decided to take my chances.  That turned out to be a HORRIBLE decision later on.

Here's the "Red Devil" in action:

And here's Mom about 6 hours in, being a total trooper about the whole thing.

Vinblastine was next, then Dacarbazine was last.  They then did one more saline flush, unhooked my port, and I was done!  The whole process lasted about 8 hours.  Aside from the tiny bit of nausea during the Rituxan, I didn't feel ill or abnormal throughout any of it.  After my Benadryl nap, I had a sub sandwich and some chips for lunch, and interacted with my mom and others during the rest of the process.

I felt great until about two hours after I got back to my parents' house, then the nausea hit.  I wasn't able to get the oral medication in my system before it started, so the rest of the night was a loss.  All I did was throw up and feel lousy.  By the next day, the nausea was gone.  I was actually feeling pretty good on Tuesday and Wednesday.  I was tired and lightheaded, but was getting around okay.

And then everything turned to shit.  Wednesday night, the mouth sores started.  By Thursday,  they were in full force.  By "mouth sores" I don't mean a measly canker sore or something.  Literally your entire mouth - roof, gums, tongue, everything - is raw.  You can't talk, you can't swallow, you can't eat without immense pain.  I was supposed to go back to work that night.  I tried.  I don't remember half the drive there.  One of my coworkers was a godsend and brought her old Magic Mouthwash with her - I'd tried to pick some up from the Target pharmacy, but they had to order it and wouldn't have had it until the next day.  It has lidocaine in it, and numbs everything for a short while so you can at least eat.  But even with my coworker's mouthwash, I was still miserable.  I couldn't function.  I had to leave after a couple hours because I couldn't do my job.

Thursday, Friday, and Saturday all I did was sleep, use Magic Mouthwash to be able to get food down (and only certain foods - room temperature, mushy ones), take Oxycodone, and go back to sleep.  I lost 12 pounds in three days.  I didn't recognize myself when I looked in the mirror.  I looked gray and frail, and my eyes were sunken and I had dark circles underneath.  By Sunday, the mouth sores were pretty much gone, but then I had a whole other set of problems.

To be as least graphic as possible, I'll put it this way.  When you take a lot of Oxycodone and anti-nausea meds and combine those with all the other issues chemo causes, you get major stomach pains. Then you have major stomach pains for three days, take more Oxycodone for the new pain, and end up with even more stomach issues.  Ones that landed me in the emergency room last night.  Thankfully my x-rays and CT scan came back okay, and I was able to go home early this morning.

I'm still having some stomach pain, but it's not nearly as bad as it was the past several days.  I'm also really weak.  I'm wobbly when I walk, and have to be really careful when walking down stairs because my legs will just buckle.  If you remember that QWOP game that was popular a couple years ago (click here if you have no idea what I'm talking about), I feel like the QWOP person when I lose my balance.  It's a hot mess.  I'm hoping it's just because I was in bed for so many days and lost muscle mass, but I think it might be weakness that I'm stuck with for the duration of chemo.

In the midst of the stomach issues, I paid a visit to my friend Amber and had her cut my hair off.  I didn't go crazy and shave it off yet, but I did get a lot taken off.  I wanted to be able to donate it, so Amber cut a little over a foot off.  I'm expecting it to start falling out next week, so I figured it would be less emotional if I got it cut shorter first.  I also ordered one of the "fancy" wigs I mentioned in a previous post.  I got the color and style in the photo that I'd posted.  I'm still trying to decide on what color to get for the second wig, but I'm leaning toward a dark blonde.

My cousin Jen came over a few days ago to bring me some essential oils to try out, but also brought a surprise for me.  Unbeknownst to me, she'd contacted Florida Georgia Line and told them my story and how I was bummed I would be missing their cruise, and they sent this back to her for me.  How cool!

Alright, I think it's time to go take a nap.  This whole transitioning back to nights thing is difficult, haha.  Ciao!

Day 35. Hair is long, but not for long.

I had my first chemo session yesterday, but I'll post more about that in a couple days after I've felt the full effects of it.  But I have to say - so far, so good!  I felt really crappy last night about 2 hours after I got home, but today I'm just a little lightheaded and a lot tired.  Knock on wood!

But I wanted to share some pictures, and to have them on here in case I ever want to look back and see what my old life was like.  A couple weeks ago I had one of my old friends, who I met when we were showing horses in 4-H as kids, come over and take some photos.  She's now a professional photographer, and one of the best in the area at that.  But because she and I have been friends for so long, she's the first person I thought of when I decided to do this.

As most of you probably know, I have crazy long hair.  It's been long the majority of my life.  I made the mistake of getting it cut really short a few years ago, and it's taken me over four years to get it this long again.  So once the nasty chemo takes my hair, I won't see it this long for many years.

So I decided to ask Ashley to take a few pictures while I still have my long locks, and she happily agreed.  I got the photos from her today, and wanted to share with everyone.  And if you're ever in the market for a photographer in the Olympia/Tacoma area, check out www.ashleywilliardphotography.com!  :)

(Make sure you change the viewing quality to 1080)  :)

And here are a couple of my favorites, just by themselves:

Day 33. Overwhelming generosity.

One thing I’ve noticed during this experience so far is how incredibly generous and kind people are.  It doesn’t matter if I’ve known them my entire life, for 5 minutes, or I’ve never even met them at all.  The outpouring of support has been overwhelming, but in a very, very good way.

Last night was the Light The Night walk at the Tacoma waterfront, and I was glad to be a part of it.  While I wish I didn’t have to deal with this lymphoma monster in the first place, the Leukemia and Lymphoma Society is a cause that I’m happy and honored to support.  For the past couple weeks my team had been raising money for the society, and I still can’t believe how much money we were able to raise in such a short time.  Our team ended up bringing in over $3300!!

I’m also in awe over how many of my friends and family members came out to support both me and the LLS.  Some of them I hadn’t seen in years!  We ended up having about 25 people on our team (plus a couple of four-legged furry friends!), and had one of the largest groups at the event.  It was a great (and very emotional) night, and I thank everyone that came!

Back before all of this cancer crap started and I was still planning on going on the cruise, I had started talking to people in the “cruise family” group on Facebook.  I’d done the same thing prior to the first Sixthman concert cruise I went on, and ended up befriending a couple people in that group that to this day I’m still friends with. So I happily chatted with people in the new group for months and since I was a Sixthman veteran, I was able to answer many questions they had. 

When I found out that I’d no longer be able to go on the cruise, I made a post about it in the group and told everyone how bummed I was that I wouldn’t be able to meet them and party with them onboard.  I thought maybe I’d get a couple “get well soons” but I never, ever expected the response I got.  Since my original post, a huge amount of people have decided to wear violet bandanas onboard. They’ve organized an unofficial violet theme night, and ordered ribbon pins to give cruisers as they board the ship.  They’ve tweeted the artists and emailed Sixthman to try to get as many people involved as possible.  They’ve asked for my address so they can send me souvenirs since I won’t be able to get them myself.

I’m starting to tear up just recounting all of the things that I’ve seen people post on the group page.  These are people that I’ve never met before, complete strangers supporting me out of the goodness of their hearts.  I wish there was something I could do to give them a proper “thank you,” and I really hope there is a second annual Florida Georgia Line cruise so I can hug each and every one of them.

A couple weeks ago, I found a woman online who runs a non-profit and does one of the nicest things I’ve ever seen anyone do.  She knits beautiful hats and sends them to cancer patients, free of charge, and the only thing she asks for in return is for referrals to other cancer patients.  I received a GORGEOUS hat from her a couple days ago, and I’m not even going to wait until I’m bald to wear it. It’s stunning.  Thank you so much, Linda from Connie Caps, for everything you do!

I never in a million years would have wished for cancer, but it did come with a tiny bit of good - it has shown me that among all of the bad shit in the world there are still selfless, amazing people out there.  For that, I am thankful.

Day 31. Port surgery.

One month.  It's been exactly one month since I was diagnosed with cancer.

It's amazing how much everything can change in one month.  In July, I wrote a "to-do" list in my planner for this week.  Go tanning.  Buy tank tops.  Get a Brazilian Blowout done on my hair.  Pick up luau items for one of the theme nights.

I had to white all of that out.  Now my "to-do" list has a whole new set of items on it.  Make a list of the medications I now take to carry with me.  Order a medical bracelet so if something happens to me, paramedics know not to give me oxygen.  Call my insurance company and see if so-and-so is covered.  Make an appointment to get a foot of hair cut off.

It still doesn't seem real.  Even with the scars and the new foreign object in my body, it doesn't seem like this is my life.  I don't know if this is something I'll ever accept or get used to.  But I can guarantee you at least one thing - I will never stop fighting this.  Even when I'm feeling like complete shit and on the verge of puking my guts out, I will keep pushing.  I will win my battle, no doubt about it.

I got my port put in yesterday.  I was afraid that it was going to look awful, and that you would be able to see it protruding through the skin.  But when I came to and looked at it, I was pleasantly surprised!  There's barely even a lump where it is.  It actually took me a little bit to find the access point.  There will still be a scar from the incision, but the surgeon put the incision below the port instead of above like I'd expected.  So the scar will be below where the necklines on most of my shirts are.  I'll still have the visible scar on my neck from where they had to access the vein, but that one is small.  The one below the port is much bigger, so I'm glad that one can be hidden.

The place where my fingertip is in the second photo is where the port access point is.  For those of you who have never seen what a port looks like, this is it:

The circle on the top of the device is made out of silicone, and that's where the needle is poked into.  The catheter was inserted into a vein in my neck - I think it was the jugular, but it could be the superior vena cava.  I can't remember.  Like I said before, this is where I'll have my blood drawn from before every chemo session, and this is also where they administer the chemo drugs.  If they were to do it in my arm, it would wreck my veins, so this is a much better option.  I'll have this in my chest for about a year - it will stay in 6 months after I finish treatment.

As most of you know, I've already started looking at wigs.  I'm just assuming the worst and that my hair is going to fall out completely, so I want to be prepared.  I'd love to have a wig made out of human hair, but it just wasn't an option for me - they're thousands of dollars.  Unless I want to sell one of my kidneys on the black market for some extra cash, there's no way I could afford it.  I can't justify spending that much money on a wig.  So I was just going to get a couple decent-quality synthetic wigs.  

Dr. Blau had written me a prescription for a "cranial prosthesis," so I called my health insurance company today out of curiosity to find out how much they would cover, if anything at all.  To my surprise, they will cover the cost of TWO wigs per year, as long as it's for a medical reason.  And by "cover the cost" I mean ONE HUNDRED PERCENT covered.  And get this - there's no limit on the cost.  Not only can I get my insanely expensive, kidney-on-the-black-market wig, I CAN GET TWO OF THEM.  I almost started crying.  It may sound silly and shallow, but losing my hair is probably one of my biggest fears of this whole ordeal.  I've been growing my hair out for years, and have had long hair for about 90% of my life.  It's part of who I am.  So when I learned that I can get a high-quality human hair wig, I freaked out.

This is the wig that I'm in love with.  I'm not sure if this is the exact color that I want, but it's pretty dang close.  There's a medical spa in Gig Harbor that sells them and bills insurance, so I'm going to go pick out a color during my "good week" following my first chemo session.

Yikes, my neck is throbbing - time to go take some more drugs!  Ciao!  :)

Day 29. "Hi, I'm Cancer, and I'm here to take over your entire life."

You know how a couple weeks ago I said I didn't feel like I have cancer, and I could just pretend everything was okay for a while?

"A while" is up.  I feel it now.  My entire life has become about cancer.

My body is constantly aching.  My back is sore all the time, and it hurts to sit up or lie down.  My hips ache, and every now and then I get a sharp pain in my abdomen.  The itching is getting worse.  I can't touch my legs before bed, or else I'll be up for an hour scratching uncontrollably.  And I have to be really careful when shave them because of the raised bumps where the patchy skin is.  If I'm not, they end up a bloody, scabby mess.

Even if I couldn't physically feel it, cancer is still all around me.  It's in everything I do, and everything I touch.  I have had so many doctor's appointments my head is spinning.  I've had to go shopping to put together a "chemo bag" and to buy comfortable clothes and warm beanies.

And I've now been told I can't do something because it's too dangerous to my health.  I lost my cruise.  The cruise to the Bahamas in 24 days with the band Florida Georgia Line.  The last normal activity that I was clinging to, a week where I could pretend that everything was okay and I was just like everyone else onboard the ship, has been taken away.  I get it, though.  My health absolutely comes first, and I told Dr. Blau that I would do whatever she recommended I do.  So when she told me she highly suggested not going because if I caught an infection somewhere I couldn't get immediate help, I could die?  I listened and obeyed.  It still sucks, though.  Instead of laying on a beach in paradise listening to one of my favorite bands, I'm out hundreds and hundreds of dollars and all I get out of it is a signed lithograph reminding me of the vacation cancer took from me.

I still have a lot to be thankful for, though.  And I refuse to feel sorry for myself.  I have an incredible group of family and friends behind me.  The amount of people who have called, texted, and emailed me is incredible.  I never thought I'd have this many people standing behind me during this fight.  One of the police officers I work with even asked me to order a bunch of violet "cancer sucks" bracelets so he can give them to everyone in the department to wear.  The kindness and support from everyone around me has brought me to tears several times.

The one person who has been with me literally every step of this journey is my mom.  I'm so grateful to have her and to not have to go through this alone.  She's gone with me to every important doctor's appointment, has offered to chauffeur me to every chemo session, and has asked me to stay at her house during my post-chemo crappy days.  She's organized a team for the upcoming Light The Night walk that benefits the Leukemia and Lymphoma Society.  She's done endless amounts of research about the disease, and is constantly sending me links to new information or other things she's found online.  She's even put her love of jewelry making to use, and created beautiful violet beaded bracelets for us.  I may be biased, but I have the best mother on the face of the planet.

There's a lot of stuff coming up for me, and I'll try my best to update along the way!  Tomorrow I'm having surgery to have my port put in.  That little thing will make my chest look like I have an alien inside me trying to bust out, but it's so much better than the alternatives.  Saturday is the Light The Night walk, and I'm so excited to help out LLS!

Then Monday is my first chemo session.  Trying to learn all the details about chemo has been one of the most difficult parts so far.  I still can't tell you which drug is which, and which ones are a drip versus a push, and which one can cause heart problems.  I went to a "chemo 101" class this week, and was loaded up with paperwork for all of it.  Each drug literally has a 6-page packet with information about it.  Mostly side effects and all the crap it can cause.  I was sent home with prescriptions for about 6 new medications.  Anti-nausea, anti-anxiety, even a heartburn medication to help with the mouth sores chemo causes.  I've never had this many prescriptions in my life.  I suck at taking pills when I'm supposed to, so this will be a challenge at first!

I also just found out that my employer approved my revised schedule at work, so I'm really happy about that!  It will make it much more easier to work during chemo, as I plan and hope to do.  I normally work Wednesday-Friday and every other Saturday.  Now I'll be working Thursday-Saturday and every other Wednesday.  So on the weeks I have chemo, I'll have Wednesday off and have an extra day to recover before going back to work Thursday night.  It will also be my 3-day week, so that will really help when I'm tired.  I'm so thankful that I work for a city that allows my schedule to be moved around.  I want to take as little sick time as possible, so this helps immensely!

Speaking of work, I need to hop off of here and get ready to leave!  Ciao!

Day 21. Stage 4 is not a death sentence.

I got my PET scan and bone marrow biopsy results today.

I'm a stage 4.  I have stage 4 cancer.  And you know what?  I'm sort of okay with it.

Don't get me wrong, it was shocking and it completely sucked when Dr. Martin (who was standing in for Dr. Blau while she dealt with a family emergency) told this to me, as no one wants to be told that their cancer is almost as bad as it gets.  But thank goodness I'd become best friends with Google ahead of time, because I already knew that while stage 4 is not the optimal result, it's not the end of the world, either.

I've discovered that lymphoma is unlike any other cancer out there.  It's the easiest to treat, and the staging is completely different.  Stage 4 for lymphoma indicates that there is cancer both above and below the diaphragm, as well as organ or bone marrow involvement.  The long-term survival rate is lower than the other stages of lymphoma, but is still WAY higher than the survival rate of other stage 4 cancers.

Apparently my PET scan lit up like a Christmas tree.  The cancer is in my right armpit (where the biopsy was done), my upper abdomen, my lower abdomen, my lower back, and possibly in my jaw and sinuses.  It's also in my liver and spleen, which is why it's a stage 4.  They consider it "advanced stage" lymphoma, and since it's a slow-moving cancer, I've probably been living with it for a while.

It sounds shitty, and it is, but it could have been way worse!  I have no bone marrow involvement, which I am incredibly thankful for.  That would have made it much more difficult to treat, and there would have been the possibility of having to have a bone marrow transplant down the line.  Having no brothers or sisters, it would be hard for me to find a match.  So I'm glad I don't have to worry about that!  I also don't have bulky disease - there are no large masses or tumors anywhere, just little splotches of cancer all over the place.  Bulky disease is much more difficult to treat, and it would mean having to have radiation in addition to chemotherapy.

Learning what stage my cancer is also means that I now know for sure what my treatment will be.  Chemotherapy is the winner.  I'll be doing the ABVD combination that is the common treatment for Hodgkin's lymphoma, but since NLPHL has both Hodgkin's and non-Hodgkin's characteristics, they're tossing one drug from the non-Hodgkin's chemo combination into my mix - Rituxan.  I'll be doing 6 cycles of chemotherapy (two treatments per cycle, so 12 treatments total), and will have a treatment every other Monday for six months.

I've decided to forgo freezing my eggs.  I found out there's only a 10% chance of infertility with ABVD, so I chose to start my treatment sooner instead and hope for the best as far as my fertility goes.  I'd planned on not having to start chemo until the middle of next month or later since the cryopreservation process takes up to 6 weeks.  Instead, I'll be starting chemo in a couple of weeks.

So what happens before chemo?  Lots, apparently.  I had to get a flu shot today, which means I'll probably catch a cold in the next couple of days.  My body has always worked that way - I don't get the flu shot, I don't get sick.  I get a flu shot, I get the flu.  But in this case, I have no choice.  If I get sick during chemo, it could be really bad.  It can turn into pneumonia and a hospital stay in a heartbeat.  So I'll have to be really careful no matter what, but the flu shot will help.

Next week I have a "Chemo 101" class, and will learn everything there is to know about what I'll be going through.  That's next Monday, and the following day I meet with Dr. Blau for a follow-up to today's appointment.  Sometime in the next week or so, I'll have to have an EKG and pulmonary function test done, and I'll also have to have surgery to have a port put in.  That will go in my chest just under the skin and attach to a vein, and they'll use that to draw blood before my treatments and also use it for the actual chemo drugs.  That way they won't have to try to find a vein in my arm every single time, and I won't have to have a PICC line in my arm that tends to get infected easily.

Since chemo is 100% in my future, and completely losing my hair is a very real possibility, my mom took me to look at wigs after today's appointment.  I didn't expect to buy anything, but ended up purchasing a fairly inexpensive, "night out" wig.  I've named her Veronica, haha.  Don't mind the lace on my forehead - I haven't trimmed it yet.

I also found this "everyday" one that was more expensive and I liked, but didn't buy.  I'm hoping since my hair is really thick it doesn't completely fall out, and instead just thins a lot.  But if it all falls out, I'll go back and buy this one.

Even my mom got involved in the fun!  :)

It was really difficult being in the wig shop at first.  It was overwhelming, and I almost walked out.  It was like my bald future was staring me straight in the face.  But I forced myself to stay, and actually had fun playing with different looks.  I'm still completely dreading losing my hair, but having some fun wigs will help make the experience a little better.

Okay, I need to get some food in my stomach before it easts itself.  Ciao!

Day 18. Inspiration.

Day 15. Bone marrow biopsy.

I finally met with an oncologist on Monday. My plan going into it was to see her now since she could get my in, then go see one at SCCA later on.  Plans have changed!  Dr. Blau is amazing.  I liked her immediately.  I was afraid that she wouldn't be familiar enough with my cancer since breast cancer is kind of her specialty, but it turns out she's worked with lymphoma patients a lot and is close friends with one of the top lymphoma specialists in the country.  She said that whenever she has a lymphoma patient, she runs everything by him.  Sold!

When I went to see Dr. Blau, my diagnosis was still not 100% confirmed.  We hadn't heard back from the pathology specialist in Washington DC.  Dr. Blau made a couple calls and got my diagnosis confirmed just a few minutes into the appointment.  I officially have nodular lymphocyte-predominant Hodgkin's lymphoma.

After that, the craziness began.  Dr. Blau really got the ball rolling on everything.  She had me talk to the office's financial advisor about options for freezing my eggs.  (Turns out there's a clinic in Seattle that offers a humongous discount for cancer patients - like, thousands of dollars off the normal cost.  Score!)  She decided that we should do the bone marrow biopsy that morning in her office, so she had a team of about 3 different people come in and prep me, and did my biopsy in between patients.

Ohhhh, the bone marrow biopsy.  It was horrible.  Not as bad as I thought it would be, but horrible nonetheless.  A nurse came in and put an IV in my arm, and hooked me up to some fluids before drawing some blood for testing.  They couldn't do full-on sedation in Dr. Blau's office (which would have been much preferred), but they offered to give me conscious sedation.  I eagerly accepted.

Conscious sedation is like happy juice.  It made me feel drunk, and although I could still feel the pain (oh man, did I feel it), it made me care less that I was hurting.  Hey, it was a lot better than being totally awake.

For the biopsy, Dr. Blau had me lay face down on the table, and she poked and prodded until she found just the right spot.  It's a certain part of the hip that has to be biopsied, and it's basically at the top part of your ass.  She used a bit of novocain to numb the area near the surface, then went deeper and numbed the area around my hip bone.  Honestly, the second part of the novocain was one of the worst parts of the whole experience.  It hurt like hell.

After everything was numb (sort of), she made a small incision and stuck a huge needle into my bone.  You really have to work to stick a needle through bone.  There was a lot of pushing and twisting, and it was the weirdest sensation ever.  I don't even know how to describe it.  The first needle was used for the aspiration - bone marrow tissue is taken out in liquid form in a tube and used to put on slides.  Dr. Blau made the comment that I might be anemic based on the color of my blood, and that worries me - anemia is a sign that the cancer could have spread to the bone marrow.  But I'll cross that bridge if I come to it.

After she'd gotten enough liquid tissue out, Dr. Blau removed that needle and then pushed an even larger, hollow needle into a different part of my hip bone.  Bigger needle = hurts wayyyy worse.  I'm proud of myself - I didn't cry.  I really wanted to, but I didn't.  I definitely groaned and shoved my face in the pillow, though.  Once the bigger needle was in place, she took a smaller needle and ran it through the bigger one.  I guess a cap or something is then placed on it to create suction.  You know how when you have a straw in soda and you put your thumb over the top and pull the straw out, the soda stays inside?  This kind of worked the same way.

Except you can't just stick the needle in and then pull it out and call it good.  No, apparently bone marrow is a stubborn little jerk, and you have to twist the needle around to free it from the rest of the marrow.  And my marrow is extra stubborn, and not enough came out in the needle.  SO IT HAD TO BE DONE ALL OVER AGAIN.  It sucked, no pun intended.

After that, I was totally done.  I sort of remember the ride home.  I ended up just sleeping the whole rest of the day.   I was really sore the rest of the night, and still a little sore yesterday.  Based on what people online have said about their experiences, I expected to be out of commission for a couple days, but it really wasn't that bad.

I have a PET scan scheduled for Friday morning.  I'll have to get injected with this radioactive material (how freaky does that sound?), let it absorb into my body for about an hour, then go in a giant body scanner and see if anything lights up on the scans.  This will determine if the cancer has spread to any other lymph nodes or organs, and will tell what stage my cancer is.

I have a long work week this week - it's my 4-day week, plus I work overtime on Sunday to make it 5 days.  With my PET scan eating up a lot of my sleeping time on Friday, it's going to seem even longer.  I'm trying to work the same amount of overtime that I've been working most of the year - at least one day a weekend - but I don't know how much longer I can keep it up.  I'm getting more and more exhausted, and I don't know if that's the cancer fatigue itself, or if it's the stress on top of the cancer.  I'm totally willing to give up the overtime shifts.  I'm just hoping I'm still able to work my normal 12-hour nights while I'm going through treatment.

Well, I'm going to fix up a salad for dinner (yes, dinner at 4am - the life of a night shifter, haha) and catch up on Nashville before I go to bed.  Ciao!

Day 12. Questions.

I have my first appointment with an oncologist today. I still have my heart set on SCCA since they have so many lymphoma specialists, but I really want to get the ball rolling on my scans and getting this sucker staged. So in a few hours when I get off work, I'm seeing a local oncologist that was recommended to me by a couple of friends.

I had to come up with this while I was in between calls at work tonight. May I present to you something I call The Giant List of Things I Never Thought I'd Have To Ask In My Life: 

Day 7. Distractions.

Everything is still at a standstill.  This is the most frustrating part so far - the waiting.  When I was first diagnosed, I was devastated but I immediately went into fight mode.  I just want to hurry up and start treatment, because the sooner I begin, the sooner I'll be in remission.  But after a week of nothing, I've started to lose my positivity and have had too much time to think about everything and get even more scared.

I'm still waiting to hear back from the specialist in Washington DC about whether NLPHL is actually the sub-type I have, or if it's some other type of Hodgkin's.  And until I have a 100% diagnosis, the Seattle Cancer Care Alliance won't see me.  I did get a call from them today though, and they're reviewing the referrals from my primary care physician and my surgeon.  The next available appointment isn't for two more weeks, but they're looking at my charts to see if my case is more urgent.  As much as the waiting sucks, I'd rather it be two weeks before I see them than find out that my case is urgent.  So in the meantime, I'm going to try to get in to see a local oncologist sooner, then go see one at SCCA to get a second opinion.

While I wait, I've been doing a lot more research about NLPHL since that's the sub-type I most likely have.  I've found both good news (well, as good as cancer news can be) and bad news.  Good news, of all the Hodgkin's types, NLPHL is the easiest to treat.  In fact, there's a good chance that if it's a stage I or II, I may not have to have chemo at all.  A lot of NLPHL cases are treated with radiation and Rituxan.  How great would that be?!  I mean, the treatment would still suck, but it would be a lot better than chemo!  The bad news about NLPHL is it's not exactly curable.  Most patients relapse.  More than once.  There's a very good chance that I could relapse and have to fight this cancer 3-4 times in my life.  If not more.  But I'm trying not to let that distract me.  I have to focus on getting a knockout in round one, and hope that there are no more fights in my future.

It's still easy for me to forget that I have cancer.  I'm going to make the most of that time, I've decided.  Because in a couple of months, when the side effects of treatment are kicking in, it will be with me constantly.  But for now, I can still pretend that I'm a healthy 27-year-old.

I took my mom to the Seahawks/Broncos game on Sunday, and it was the best day I've had in a long time.  It was just what she and I needed after the week we'd had.  If you've never been to a Seahawks home game, it's one of the most electrifying experiences ever.  The people, the team, the atmosphere - it's incredible.  I've been to a lot of games, but this one was the best, by far.  The score was way too close for my liking, and I thought I was going to have a heart attack during overtime, but it was amazing.  It made me forget about everything else for a while.

It doesn't take much for me to remember, though.  My incision from the biopsy still hurts, and every time I lift my arm too high or roll the wrong way when I'm trying to sleep, I remember why it's there.  When my calves start itching like crazy, I remember.  Certain words or phrases are a shot to the gut.  I was at the surgeon's office for a follow-up on Friday, and he said "Well, that's the last I'll be seeing of you, unless your oncologist refers you to me to have your port put in."  Port.  Oh yeah, the thing that I have to have surgically implanted in my chest.  Yup, thanks cancer.

You know what the worst part has been though?  The looks on peoples' faces when they see me for the first time since finding out.  The sadness and the pity.  I hate it.  I hate people feeling sorry for me and looking at me like I'm broken.  

I'm not broken.  I might be scared, but I'm a warrior.  I will win this battle.

Day 3. Looking back and looking forward.

Obviously, I haven't gotten anymore creative with my post titles.  I'd like to say that I'll come up with something a lot more witty, but let's be honest - 200 days from now the post is probably going to be "DAY 203."  :)

Yesterday was really hard.  I announced my disease to the world and posted a link to this blog for all to see.  I called my boss to let him know what was going on.  I tried to schedule an appointment with an oncologist at Seattle Cancer Care Alliance, and failed.  Hopefully that happens today.  Overall, yesterday was a whole bunch of suck.

It still hasn't really sunk in yet.  It's starting to though.  When you're 27 and you have to search the internet for information about freezing your eggs because the chemotherapy is probably going to destroy your chances of ever having a child the normal way, it starts to sink in.

A little bit ago I was looking at a couple of posts from an old blog that I used to have on this account. It's amazing how much your life can change in a matter of years.  Five years ago, I was days away from my first trip to Nashville.  I was seeing my favorite band (that actually doesn't exist anymore) perform on their first headlining tour, and my biggest worry in the world was whether I would be in the front row or not.  Never in a million years would I have guessed that in less than five years, I'd be fighting this monster.

While it's no longer a top priority in my life, I still have the travel-for-music bug.  And I'm really thankful for that, because the Florida Georgia Line cruise to the Bahamas that's coming up in November is the only thing that's keeping me sane right now.  When I start to feel overwhelmed with all of the cancer crap, I have my friends to distract me by talking about cabana rentals in Great Stirrup Cay.  It won't make the cancer go away, but it sure is nice to be able to picture myself laying on a lounge chair in paradise in 51 days.

I should probably head to bed.  I have to wake up earlier than normal for a follow-up appointment with the surgeon, then I go back to work for the first night since having the biopsy done.

Day 1. The beginning.

It took me a while to come up with a title for this entry.  Everything I kept typing out was negative, making references to doomsday and today being the worst day of my life.

But finally I settled on a simple "day one."  Because this isn't the end of life as I know it.  In fact, this is the beginning of the rest of my life.

Today I found out that I have cancer.

God, that sentence really sucks.  I don't know what's worse, typing it out and seeing it laid out in front of me, or having to say those words out loud to my family and friends.  No matter how many times I have to say it or read it, it doesn't get any easier.

I'm not surprised, though.  Honestly, I've been expecting to hear that word for weeks.

This whole mess started in late July, when I was at work and noticed that my right armpit was kind of sore where my bra was hitting it.  When I got home and undressed before bed, I noticed a visible lump between my breast and the crook of my armpit.  It wasn't huge, but it was large enough to the point I was surprised that I hadn't seen it sooner.

I googled "armpit lump" and came up with a few possibilities, including lymphoma.  I got a sinking feeling in my stomach, but I immediately dismissed it - there was no way it could be cancer.  I read a few places that it was most likely enlarged lymph nodes caused by infection, and would probably go away on it's own in a couple of weeks.  So I left it alone and waited.

A couple of weeks later, when the lump hadn't gone away (and had actually gotten a bit larger), I called the doctor and made an appointment.  The doctor said it was probably an infection, but sent me to a radiologist to have an ultrasound done.  The ultrasound showed that all of my right axilla lymph nodes were enlarged, with at least one of them being about 6cm in diameter.  The radiologist said that it could be lymphoma, but it could also be an infection, most likely cat scratch disease.  So he and the original doctor decided to go the cat scratch route, and put me on antibiotics.

I did a round of antibiotics, and they did nothing.  I decided at that point to go see my parents' doctor in my hometown and see what she thought I should do.  She took one look and poke at the lump and said it most likely wasn't cat scratch because cat scratch is extremely painful.  Aside from the initial discomfort from my bra, the lump wasn't painful at all.  She also said that since the only scratch I'd gotten was on my foot, it would have been the lymph nodes in my groin that were affected, not my armpit.  She said it was either some weird, painless form of cat scratch, a funky bacterial or fungal infection that didn't respond to antibiotics, orrrrrrr it was lymphoma.  It was at that point that I realized it was a good possibility that I could have cancer.

Dr. D immediately ordered blood work and referred me to the surgeon for a biopsy.  I'd seen her on the Friday evening of Labor Day weekend, so I couldn't do anything until the following Tuesday.  I spent the weekend abusing the crap out of Google.  I realized how many symptoms I had that I hadn't associated with lymphoma until all of this was happening - fatigue, red splotchy rashes and itchy skin (I have psoriasis, so I thought it was related to that), lower back pain (I injured my back in high school and have recurring back pain, so I thought it was a flare up).  Things that I now realize had been going on for about 2 months before the lump showed up.

The Tuesday after Labor Day, I got a call from Dr. D's office.  All my blood work was normal except my lactate dehydrogenate (LD) levels, which were high.  A quick check with my new best friend Google showed that high LD levels indicate only a couple of things - anemia (which had been ruled out with my other normal blood work), liver disease, muscle injury... and lymphoma.

I went into "hope for the best but expect the worst" mode at that point.  I started worrying about how much sick leave I have available at work, and if I could arrange my schedule to make it easier during chemo.  I had a talk with my mom about the worst-case scenario, and how we would handle things if it came down to it.  I even started pricing wigs online.  The couple weeks before I met with the surgeon were really stressful.

I had an excisional biopsy done last Friday.  The surgeon recommended doing this versus a needle biopsy, because sometimes the latter doesn't get enough tissue to biopsy.  It was a no-brainer - I agreed to the excisional.  The surgeon removed just one lymph node during the surgery - the 6cm node that I've been calling "big fella."  I didn't know it until today, but my mom had asked the surgeon afterward about the chances of it being cancer, and he said based on his experience and how it looked, he thought it was malignant.

The first couple days after surgery were a Percocet fog, but I was wide awake by the time Monday rolled around.  I wanted the results.  But Monday turned into Tuesday, and Tuesday turned into Wednesday, and I still hadn't heard anything.  I was going nuts.  So I called the pathologist's office and bugged the crap out of the receptionist.  I'm glad I did, because it went from "the report is not ready yet" to the pathologist calling me back and giving me the results just before he was supposed to go home.

I’ve been diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma.  It’s a very rare sub-type of Hodgkin lymphoma - only about 5% of Hodgkin’s is NLPHL, and only about 500 people in the United States are diagnosed with it each year. But, like other lymphomas, it's very curable with a high survival rate.

That’s pretty much all I know at this point.  Because NLPHL is so wonky, the pathologist is sending my lymph node tissue off to a specialist in Washington DC to confirm that this is the type of lymphoma I have.  I have to go meet with an oncologist next week, and soon after that I’ll have to go through a bunch of tests and a bone marrow biopsy.  That will determine what stage my cancer is, and if it’s spread to my liver, spleen, or bone marrow.  Once they know what stage it is, they’ll decide what treatment will be best - chemotherapy, radiation, or both.

I'm scared shitless, and I'm overwhelmed from trying to process everything.  But I'm also trying to stay positive.  I will beat this thing.  I'm so lucky that I have family and friends supporting me, and a job that has great medical benefits.  I've been dealt a crappy hand, but it could be a lot worse!

I'm ready to start fighting!