My Last Blog.

To everyone whose come in and out of my life –

The time has come to say goodbye. I never thought it would be so soon but I guess God had different plans.

There have been so many of you that have affected my life in the most positive way, and I wanted to say THANK YOU. Thank you for bringing me joy till I thought my smile couldn’t get any bigger. Thank you for making me laugh till it hurt. Thank you for showing me what love is. Thank you for being there, for supporting me, for encouraging me, for teaching me, for holding me up, for guiding me, for EVERYTHING. Each of you made me who I was.  Thank you for allowing me in, for letting me be a part of your lives, for giving me the chance to love you. Each and every one of you has affected my life in a positive way. You made me, me. And for the longest time, I was so happy with what my life looked like.

Although this disease has finally “won,” I want you to know I never gave up. I continued to fight until the end.  And I did it for all of you. You have all given me so much; I wanted to show you I could do it, to make you proud to call me a friend.

I want you to know that I lived without regret. I loved strong and loved many. I can say that I’ve seen so many beautiful parts of this world that I will always take with me. I can say that I have SO many memories that have kept me going, kept me smiling and most of all, kept me fighting.  Do I wish I was able to stay longer? Of course. Who doesn’t? But it seems that it just isn’t the way things turned out to be.

I will take a part of each of you with me and I will cherish it for eternity. Life is what you make of it, and I want all of you to make your lives everything you always wanted it to be.

Please don’t pity or feel bad for me. Stepping back, I can see that I had everything I always wanted. And you were all a part of that.

Thank you. I love you.

 

With all my heart and soul,

    Erin

The Time Has Come.

Being on Hospice for 6 days becomes even scarier when you're told you have days to weeks until the time has come.

The last 2 weeks have been such a whirlwind I honestly don't even remember them. Tuesday, May 24th I was home in WV when I woke up feeling like I was super bloated. The next day my stomach was so bloated feeling that I looked preg and felt like it was going to explode. I kept calling my doctor but they said unless I was throwing up there was nothing that could be done. Welp, Friday the 27th I started puking like the chick from The Exorcist. Just tons and tons of green liquid bile.

Dan and I wound up leaving for Jersey that night around 10pm, not knowing what the next day would bring. I think as we pulled down the driveway I just knew that would be the last time I'd ever see my house.

We went to the ER at NYU that Saturday, the 28th where my scans showed my mass had grown again and was pushing on my stomach even more, blocking it. There were so many things being thrown around but they finally came to the conclusion that a tube had to be placed in my stomach, down through my nose, in order to drain the bile and any other fluid. It was horrific. Finally, 2 days later by some Grace of God, a team of other doctors said they would be able to place one directly in my stomach which would be connected to a bag to be drained. Anything would be better than to have some giant tube down the back of my throat into my stomach.

Once that was done and we found out nothing more could be done for me, I was moved to St Peter's University Hospital Hospice Oncology Ward on Saturday, June 4th. Since I was coming to terms with not being able to fulfill a normal Bucket List, riding in an ambulance with the lights on was added. Let me tell you - ambulances SUCK. I had JUST had this tube installed in my stomach and the whole hour ride from NYU to St Peter's was filled with bumps and dips and pain and white-knuckled hands. Let's just say I won't be looking forward to any other rides going forward.

So anyway, here is where I have remained since they brought me. Because of this tube, I've only been allowed to have clear broths, so I haven't been able to eat...ANYTHING. It SUCKS royally. I figured once the end came I'd at least be able to pig out on every and anything I could possibly want since I was so diligent but noooooooooooo. Why give me that??! I can feel myself becoming weaker and more tired. It's scary.

This whole thing is scary. I'm scheduled to move to my mom's house on Monday so hopefully that goes smoothly and I'll at least be able to spend the end at home and not in some hospital room. It's just hard to imagine that this is Life. I try to look back and remember how incredibly AMAZING my life was up until this point and I can at least say that it really was. I travelled, I loved, I sang, I did some life changing things...I had a wonderful childhood with amazing parents and awesome friends. My Life has been incredible - I just wish it was longer.

All I can say for now is, please continue to pray for me - not to be cured because that's obviously not happening, but for peace. Peace of mind while I deal with whatever lies ahead. The unknown is the scariest part of this whole thing and while I'm doing my best to allow God to take the wheel, it's so incredibly terrifying.

Thank you for the unconditional support, messages, love, positive thoughts and prayers now and for the last almost 8 years. I would've never made it this far without all of you.

Yes.

The question was always, "Should I Shave It?" The answer has become "Yes."

Last weekend I took the plunge. It wasn't easy. I was talking one day about how I hadn't started losing my hair yet and legit that SAME night, there it went. It wasn't in clumps like I had heard horror stories about - it was just enough to know that it had begun.

A few days later I was still losing it and losing more of it and my worst nightmare of looking like a "Cancer Patient" was becoming a reality. Was I really going to lose my hair? I couldn't believe it had come to this. The annoying part is that I was actually looking forward to losing it everywhere else. No more shaving? That had to be a dream come true! But guess what?? My head is the only place I was losing it. How unfair is that?

It was Saturday, April 30th and I was having a meltdown - not wanting to look the way I felt. I finally ran downstairs, got a pair of scissors and cut off a huge chunk right in the front of my head. I continued until I looked like a beauty school classmate had gone rogue.

I shaved my husband's head first just to see what number the buzzer should be on...then it was my turn. It took a long time being that we had to buzz through the clumps of existing hair, but it ended up even and when I turned to look at myself, it wasn't all that bad. I thought it would be worse than it was.

Now every day I feel like I have that phantom limb thing where I wake up and try to put my hair in a ponytail, only to remember I don't have hair anymore. I'm still getting "used to it," that's if I'll ever actually get used to looking like GI Jane.

My mom, husband and I tried going to a wig store before I shaved it off and that was just a nightmare. I think it was more traumatizing to go there than to actually shave it off. Having fake hair on a head with no hair just isn't for me. But now I'm worried what I will look like when the rest of it falls out. What I'll look like with a bic'd head. It doesn't seem all that attractive to me - on me. I'm just hoping it goes by quickly.

Tomorrow is my last chemo. Then the following week I'll have scans to know what is going on. I'm so nervous and this is probably the most frightened I've ever been in my little life. I'm not ready for it to be "time" yet. But what other options do I have? So for now, I guess I'll just say, "Fuck Cancer" because really, FUCK CANCER.

I Have To Shave It.

A little different from my actual title - but this time I actually have to.

I haven't written in a long time. A LOT has happened since. I had radiation on my left lung, pancreas and right kidney. I was supposed to have ablations done to my right lung but I wound up with pneumonia as a "fuck you" gift from my lung radiation. All this was done in the last 6 months or so.

On March 17th, I wound up getting really sharp pains in my stomach and was throwing up and couldn't eat anything. This went on for a few days until I went to a local ER in WV on the 20th (since I was home at the time). My Radiologist wanted them to run some scans to make sure I didn't now have Pancreatitis as a "fuck you" gift from my pancreas radiation (something I am now wishing I had) so dry CT's were run and the answer has been a whirlwind since.

To make an incredibly long story short, a few days after the scans were run I went to pick up a reading of said scans - everything had grown and included a new, massive 11.9 x 9.3cm mass in my abdomen which was pushing against my stomach and my lung (causing the nausea, pain, coughing, etc.). I almost fainted in the hallway of the local hospital. How was this possible? I had JUST had scans not even 2 months before. This was all a horrific nightmare and I couldn't believe I was having it.

Both Sloan AND Johns Hopkins wouldn't see me until mid April. I decided to go to the ER at JH on March 22nd to see if they would keep me but that wound up being a wasted trip and nothing was done. I couldn't believe it.

Due to good fortune (for once) I had a contact who made calls for me and I wound up at NYU ER on March 26th. I wound up staying until the 29th after being told I was terminal and would have only a few weeks to a few months to live.

How could this be happening? How could this thing be growing so incredibly fast? How could any of this actually be my life??? I couldn't believe that I had to accept that I was dying.

My fiancé, Dan (we had been planning our wedding for Oct 2017 which was now looking to not be possible) said he wanted to get married, so on March 29th we planned a wedding from my hospital room and wound up getting married on April 2nd, 2016. I was in a ton of pain but hopefully no one could tell and it went off without a hitch. Of course, the wedding was nothing what I had wanted and half the guest list couldn't get invited due to the space we wound up with, but it was ours and it was good and now I am married to the love of my life who wanted to marry me at my worst moment. That really says something about someone's character, don't you think?

There was no room for a honeymoon because on April 4th we met with who would be my new Oncologist at NYU. He said there was a glimmer of hope with a combo of chemo meds. I was now facing my worst nightmare. Do I skip the chemo and possibly die? The mass was growing larger day by day. With gritted teeth I decided on the chemo and started Thursday, April 7th.

I just had my 3rd treatment today. I was told your hair starts to fall out the 2nd week...well, it's the 4th week and yesterday I was talking to a bunch of people about it. Low and behold, last night, "it" started. Now I have no choice but to shave it. I don't want to wait until it gets super thin and globs of it keep coming out in the shower or in bed. I just want to do it and get it over with. So with bated breath, this weekend I'll (along with my husband) be shaving my head.

I keep finding myself asking how this could possibly be my life and how it could've lead to this. Everyone has their own problems and trials and tribulations - Cancer is mine. Now I'm actually fighting for my life. It feels so weird.

My mom had Hospice come in when we thought we had no hope left and I sat there looking at the nurse like she was some extinct species sitting on my living room couch. Why was this person here talking to me about making me comfortable? It is all so surreal.

So, I wound up dying my hair purple, donating 9 inches of it to a children's charity, telling Hospice to take a hike, went on a minimoon to Newport, RI, and have just been dealing with the everyday hell of chemo. The nausea hasn't been super bad, but the HORRIBLE anxiety has been kicking my ass every day. I can never seem to get comfortable, I've started getting mouth sores (joy.), I can't eat very much (I've lost 15lbs so far since this whole thing started in March), pain, annoying, dreadful chemo.

Hopefully I'll be singing it's praises once my scans come back showing that everything has shrunk but I won't know for another 2 weeks at least. Here's me with my short, purple hair a week ago...

If you can, say an extra prayer for me. We're in the big leagues now...

Ain't That Some Shit?

If you didn't catch it in the middle of my rant in the last post - I am now the proud owner of 26 ducks.

These are baby pictures of my 10 original ones in the order we got them:

6 White Pekins

(March 8th, 2015)

 

2 Indian Runners

(1 week later)

 

2 Khaki Campbells

(2 weeks after that)

 



If you can't tell, I had baby fever. And anyone that knows me, knows I love whatever animal I can get my hands on. Here are my 10 originals now:

These are the 16 new ducks (they were terrified so they're basically on top of each other) and the first time everyone met each other:

 

The gang's all here!

 

 

My boyfriend and I got our 10 originals in early March because I was researching how Cancer thrives off of acidic environments and dies in alkaline ones. So, I figured it wouldn't hurt to try to alkaline my body as much as possible. Of course, going Vegan (or as close to it as I could get since I still love seafood and cheat with 1 or 2 items a week...so yes, I know, I'm technically not Vegan but it's easier to just say "I'm as Vegan as possible" then go into explaining the whole thing over and over...) has helped that tremendously but before I decided to do that, I read how duck eggs are less acidic than chicken eggs. So when my boyfriend wanted to get chickens and I didn't, we discussed the possibility of ducks instead. I mean, who doesn't love little ducklings?! Look at those little angel faces!!

Unfortunately, you cannot "sex" a duck until they reach a certain age so we got 10 ducks without knowing what they would turn out to be. As they got older, we realized we had 6 males (4 of the Pekins and both Indian Runners) - which is no bueno when it comes to ducks. As much as I love my little angelducks (as I've nicknamed them), they can really be little assholeducks quite often.

Male ducks are rapists - it's as simple as that. The problem is, when one duck starts humping, the others come over to do it as well. So my females started getting attacked by multiple males - and I could NOT have that happen.

I found a couple that has some weird makeshift farm close by where they raise chickens, ducks, goats, turkeys, guinea's, cats, dogs...basically whatever they feel like doing that moment. I informed her I only wanted females and was told by another duck breeder that 3 females to every 1 male should be a good enough ratio where the same females wouldn't always keep getting attacked. She wound up having the right amount, at the right age, for the right price...so, voila. Twenty six ducks!

The only problem is, the new ducks must not be as old as I was lead to believe because the same few ducks still keep getting attacked. Other than that, they really require no work at all. We had to build a slight duck-house expansion when we got our 16 new ones, but they aren't harder to deal with and the new ducks are very well behaved.

Duck Palace

We let them out of their house in the morning and put them inside their house at night so they're safe from predators. They have access to food and water along with two pools (one in ground and one above ground - they're so fancy), shelter, shade, a bunch of running room. When I let them out of their pen to roam around the backyard, they stay in the yard (except a few of them have become adventurous and have started testing the waters a few feet into the woods so I've had to run into the high as shit brush to get them out...little jerks). They know where home is and most of the time they listen just like dogs. Plus they're super cute and have funny little behavior quirks that make them fun to watch. However, from being inside their pen most of the time, 90% of it is just dirt...or more like, matted down poop. They poop A LOT. Like, A LOT a lot. And they have no control over it. So they just poop and pee wherever, whenever. I have to clean out the above ground pool at least every other day and pump the in ground one at least once a week. That is definitely not the more enjoyable job.

Since my non-surgery, I've been pushing myself harder than I probably should. I do this every time I have a surgery. It's hard sitting on the couch all day and asking others to help you with everything. Today was no exception. Plus now my lung is starting to heal and beginning to get the weird tight feeling that causes it to hurt when I take deep breaths and kill when I hiccup or internally burp or anything like that. So today, God punished me...in a pretty humorous way.

I was outside with my dogs, looking at the ducks when I noticed one of my female Pekin's neck was missing feathers and she just looked super ratty. I feel bad for her! Since she's one of the 2 oldest (and largest) females, she's always getting picked on. I decided to clean the above ground pool and lock up the 4 big males (the Pekins) so that she could clean herself in peace.

The ground was already a little wet from it raining yesterday so when I dumped the pool out, a large area was totally soaked with mud and a ton of poop. I filled the pool and went to work trying to catch the big ducks. It's hard when they have so much running room, on top of the fact that the ground was wet so I was going slow, and finally the simple truth that I shouldn't be chasing around anything to begin with.

I was able to catch the first duck fairly easily. I found myself running up and down the length of the pen trying to nab the second one so I grabbed a small (and very light) 4ft plastic shovel we use to clean the inside of their house and was attempting to herd the duck into a corner. I was able to get him after a few minutes but by this time I was huffing and puffing. I knew I didn't want to be out there, running around much longer. After a few more minutes of unsuccessful attempts I started getting really frustrated. As I was coming back down the small hill towards the duck house my flip flop (yeah, I really need some good duck shoes) slid on the wet ground and yup, you guessed it. I fucking fell. Right in the middle of the mud which, let's be honest, was really mostly fucking duck poop. And as I hit the ground, I said out loud in one of the most ironic moments, "Ain't that some shit?!" <-- I kid you not.

Covered in duck shit and mud, I was PIIISSSSSSEEEDD. I came at those ducks like a raging bull and was finally able to get the last 2 little assholes into the one side of the house. I left them in there all damn day. Luckily for me, I didn't fall in a way that hurt myself. Probably because as I was going down, I aimed the side of my ass towards the ground and Lord knows I have enough padding there.

My fall was also probably cushioned with the massive amounts of wet duck shit beneath me.

You can stop laughing now.

Needless to say, I spent the remainder of the day on the couch and the ducks sat in time out all day without me feeling an ounce of sympathy for them.

1 Year and (almost) 1 Month...

WOW. I knew it had been some time since I last wrote but I didn't think my last entry was July 14th...of LAST year. That's crazy! I guess looking back I may have needed to just live through what I was going through instead of living through it AND documenting it.

In a (very large and probably very long) nutshell, I completed 3 weeks of alternative treatments/therapies in Mexico, have remained on an all organic diet, continued with my alternative supplements every day, had a left lung/right kidney ablation surgery on January 9th, 2015 (that was done at Johns Hopkins because the doctor at Sloan basically told us that having the procedure done wouldn't prolong my life - in which my mom then asked if he was God...haha), had a right lung ablation surgery on February 2nd, 2015 (which I also had done at JH), wound up radically switching my diet to an as-Vegan-as-possible regimen, began hitting the gym as hard as I did back in 2011 when I started getting more in tune with keeping myself healthy, found out I now have a tumor in my pancreas (which cannot be ablated and both Sloan and JH told me the only surgery they would be able to do is to remove the entire tail end of my pancreas as well as my entire spleen - to which I said no to both...I don't care what anyone says, I'd like to think that organs serve a purpose and are there for a reason so I don't want my spleen removed), lost about 25lbs, found out my kidney and right lung ablations have stuck and I no longer have disease in those areas, got 26 ducks and now refer to myself as a Duck Farmer, found out my left lung ablation didn't stick because it was attached to a blood vessel and my doctor wasn't able to get it all, scheduled a second left lung ablation for August 5th and now here I am, recovering from that (non)surgery.

Before I go ahead and fill cyberspace in on my most recent brush with death, I'll explain what the hell an ablation is. First of all, an ablation in layman's terms is basically when they stick a giant probe directly into whatever organ the tumor is in using a CT machine as a guiding tool, then a little balloon-esque thingy grasps the tumor, encasing it almost and either burns or freezes it. I had Radiofrequency Ablations (RFA, which is burning) done to both lungs and Cryoablation (freezing) done to my kidney.

 I'm just going to go ahead and say my first ablations (left lung/right kidney) sucked. I remember staying overnight in the hospital, unable to open my eyes because they burned SO badly...that, of course, was unexplainable and no one could give me anything to make the pain in my freakin' EYE SOCKETS go away. Then the following 2 days at home were a nightmare. I was incredibly hot and cold, I couldn't take a shit for days, I was shaking and sweating, my kidney felt like it was going to explode, my lung felt extremely tight...but yet, all in all, it wasn't my worst surgical experience by far. Notice the strained smile on my face in the hospital room (which was, by far, the best hospital room in existence! I felt as though I was in some sort of low budget hotel room, which, for a hospital, is quite spectacular. It came with it's own sitting area, lounge chair, desk/work station, flat screen, huge bathroom, wood paneling...and the food was delish. It was wonderful!) since the picture took more than 2 seconds of me having to force my eyes open...

 

 

I had 2 tumors in my left lung and 1 in my right kidney that were all ablated on 1/9/15. Prior to going into surgery, my new JH doctor (whom I really enjoy as a person) informed me that the larger of the 2 tumors in my lung was attached to a blood vessel and would be nearly impossible to get it all because in order for that to happen, they would have to ablate some of the blood vessel, which just isn't any sort of option. Still hopeful, I kind of pushed the thought of it not working out of my head until recently when my latest scans showed that the tumor was back and had actually gotten a little bigger than the first time.

The recovery time wasn't horrendous for my first set of ablations so the second one for the 2 tumors in my right lung was scheduled and performed less than a month later, on 2/2/15. I can honestly say that I don't remember much about this surgery except that once again, my eyes were so sensitive that people walking by my recovery nook may have mistaken my need for sunglasses as me being a total diva and not wanting the paparazzi snapping any unwanted photos.

I know, I know...I'm sure some of you are probably thinking, "well Erin, you kind of are a Diva..." To you I say, you can kiss this Diva's ass  ;)

SO, this catches me up to present day. I am currently propped up in bed with 4 too many pillows, Vaseline slathered all over (an in) my insanely dry nose (which I'm assuming is a lingering issue from the oxygen tube they had in my nose), on a cocktail of anti-nausea, anti-pain and anti-constipation pills and recovering from a surgery that I didn't have.

A surgery you didn't have, you ask? Oh yes...! Let me try to explain without having a mental breakdown.

This past Wednesday, August 5th, 2015, I returned to JH for another left lung ablation. The original larger tumor that was attached to the blood vessel had returned and there was also a tiny spot right below it that he was going to burn outta there as well. The week prior to my procedure, my surgery was pushed from 8am to 10am to 11am to 1pm. How fun!!!

We arrived at 11am for my surgery at 1pm. Around 12pm I was informed that the person in front of me had yet to get into surgery yet and that their procedure would take at least 2 hours. I won't bore you with all the details, but it wasn't until AFTER 4PM that I was FINALLY taken back for my surgery. Mind you, I had not eaten and now I KNEW they would keep me overnight since who knows when I would even be getting out of recovery. I was pissed, to say the very least.

I woke up a few hours later to a bunch of nurses around me saying my name, in excruciating pain because of some giant IV sticking out of my wrist where there wasn't one before. It was kind of all a sort of whirlwind experience but I know I kept telling them to give me more pain meds (as usual - since NO ONE ever listens to me when I tell them I'm some sort of tolerance anomaly) and then my doctor coming in to tell me I gave everyone "quite a good scare". Ohh, did I? How so?

 

To summarize the events that followed 5 minutes into my surgery, they were beginning to do the ablation when an air bubble just so happened to get into the blood vessel that the pesky tumor was attached to and then that lovely air bubble started to make it's way to my beautifully beating HEART! The ablation was called off and instead another team of doctors were called in to make sure I actually woke up from said ablation. JOY!

In my anti-pain induced state, all I kept asking was, well did you get it? Because even now, I just don't want to accept that I had surgery for legit no reason whatsoever. Ain't that a bitch? So again, I say with great disdain, I'm now recovering from a surgery I didn't actually have. And the even shittier part of this whole thing is that I was going to have to follow this ablation with 2 weeks of radiation to hopefully get rid of any leftover tumor that he wasn't able to get again this time around. NOW I'm going to need who knows how much more radiation to hopefully shrink the fucking thing enough to actually HAVE the ablation done again. I won't know anything more until this week when my radiologist gets back from vacation, but the whole purpose of going to Mexico and repeatedly turning down chemo was to take alternative route and not pump my body full of toxins and poison. Therefore, I'm even more upset now about having to have more radiation than what they originally told me I would need...which I never wanted to have to begin with anyway.

Basically, this whole thing just sucks some huge hairy balls. And I won't even begin to explain how horrible the night was after my non-surgery. I may have gotten 1.5 hours of sleep total, but that was in 10 minute increments. I just could not sleep for the life of me. And because I was on so much pain meds, they wouldn't give me anything to help me sleep. That night of zero sleep was followed by a morning of violently puking with 3 anti-nausea meds not doing shit to help. Take notice of my facial expression in this picture compared to the last two times I was able to bust out of the hospital post surgery...

So now my focus is recovering from the non-surgery and getting through radiation. I pinky promise to never exceed a year between entries again...if for no other reason then typing myself to sleep as I write this.

Mexico.

Like a total whirlwind, I made the decision with confidence to turn down chemo and within a few days I was booked to start an all-natural, alternative treatment at Angeles Hospital in Mexico...starting tomorrow, July 15th. This is an intense 3 week clinic that monitors you at all times. Although I wasn't nervous before, I am now. Not due to my decision but more because I didn't have much time to let everything sink in - but do I ever?

I really feel good about my decision so I'm anxious to start but of course, apprehensive too. Life is just one big guessing game so I'm doing my best to stay positive that now was the best time to do this. But, as usual, due to the always impeccable timing of my stupid disease, I'm missing Summer once again!

I'm holding onto the hope that this treatment will really combat my Cancer - even if it only holds it at bay for a while.

The largest downfall of this treatment is, of course, the cost. Since it's not approved by the FDA it's a total out of pocket expense...and it's not chump change. I had to start a fundraiser just to ease my mind a little before confirming with Angeles. It was a difficult move for me to admit to needing help with this. I hate asking people for things - especially not money. I will say, though, the shower of support I have received from this has deeply touched my heart. I feel so incredibly grateful to have known such remarkable people. I have received so many messages of support and positivity from people whom I never would've even thought remembered me, let alone cheer me on. It's amazing. I am so beyond thankful.

So now I start my journey to hopefully healing for good! I even bought a few pick-me-up t's...

I figured, they can't hurt, right? I can use all the help I can get! So wish me luck! Send positive vibes! Pray! I will appreciate anything you can do to help me out. I'm SO over dealing with this disease, I can't even begin to explain. Thank you so much in advance.

If you are in the giving mood and would like to donate, please visit: https://www.giveforward.com/fundraiser/v725/rid-me-of-leiomyosarcoma-for-good-

THANK YOU, from the bottom of my heart.

I Get By With A Little Help From My Friends.

When I was diagnosed (what seems like a million years ago and at the same time, only yesterday...), I had little resources to help me stay sane and make me feel as though I wasn't going through this horrible time alone. I was lucky to have an incredible support system of friends and family, but at the same time, no one could REALLY understand what I was going through because no one I was relying on WAS going through it.

At 23 years old, I still felt like a child in many ways and when I was told I had the Big C, it was devastating and basically forced my childhood into adulthood. It was extremely unwanted and a very confusing time for me - as well as for my friends and family. I mean, who really knows what to say or how to act when a loved one comes to them with such shitty news? No one, that's who! And can you blame them?

Through this journey of mine, I've run into some very strong and open people who, like me, were battling this piece of crap disease. Lucky for me, many of them had something to offer, whether it be advice on how to handle menopausal side effects, how to live 1 day at a time, tell me a funny story about their war with Cancer or just let me bitch to them about my own trials and tribulations. However, I didn't meet or discover many of these people and outlets until a few years into my voyage. I think it really would've been beneficial to me - especially on an emotional level - if I would've been able to be connected to other people MY OWN AGE dealing with what I was going through.

Having that said, I had a lovely young woman reach out to me through my blog some time ago who was interested in starting her own company, striving to help younger adults deal with this terrible disease. Like me, she is also fighting this disease and has had to face many obstacles in her way. Her drive and insight is amazing and she features useful tips, care packages, makeup advice and guest bloggers (including myself) on her beautiful page.

I got a chance to interview Mallory Casperson about her on-going battles and business/website, Lacuna Loft:

E: When were you diagnosed?
M: I was diagnosed in March of 2011, after a biopsy in Feb. revealed that I had Hodgkin’s Lymphoma. I had the surgery on Feb. 14th and I clearly remember wishing everyone a Happy Valentine’s Day as I went through the various parts of the hospital. Just a few days later, I received a call from the ENT’s (Ear, Nose, and Throat doctor) office asking that I come in as soon as possible...at which point the nurse I was talking to asked if I could be there in 10 minutes. 10 minutes?! I figured they must have found something infectious that I needed to begin treating...I’m pretty sure I didn’t expect cancer.

E: How did you feel when you were first diagnosed (physically, mentally, emotionally)?
M: My mother passed away in December 2010 (just two months before my biopsy and three months
before I began treatments) so my first response to my own diagnosis was something along the lines of
you’ve got to be kidding me. After that though, I remember feeling a bit like a robot. My fiancé (now
husband) and I were ushered from the ENT’s office to the oncologist where the doctor attempted to
give us a run-down of the type of cancer that I had and explained how we could go about getting the
staging done. (Staging is when they do a set of imaging scans to figure out how far along the disease is). Afterwards, we drove to a pretty place in town, parked the car, and called my dad. I felt quite worried about his feelings with the whole thing because my mother had just died. We also called my mother-in-law and slowly started figuring out what to do next.

Before the staging was done, we had no way of knowing how far along my cancer was. I felt terrified
and helpless. Behind closed doors, I sometimes cried and cried, yearning to be able to talk to my
mother about all of this. I felt so isolated. In front of people, especially my family, I really tried to be
a beacon of strength. The family of four that I had grown up in had just become a family of three and
none of us knew how to deal with that yet. This new crisis was more than we could take I think. I also
was this way at work. My boss at the time wanted us to act like nothing was happening during the
month between my diagnosis and when treatment began. I just sat in his office, nodding my head. I felt so overwhelmed and frightened that it was difficult to figure out how to take care of myself (and stick up for myself) in my work environment. I also feared that other tragedies would happen in my life too. So much had already happened...I felt almost doomed.

On another side of this all, once treatments began and I stopped working for a bit, I felt bored. I had no idea how to entertain myself now that I couldn’t work, exercise like a mad woman (I was a marathon runner), and salsa dance until the wee hours of the morning.

E: Who/what/where did you turn to?
M: I relied heavily on my friends and my fiancé during my illness. I attempted to protect my dad and
brother from most of what was happening. My little brother couldn’t really handle much of the cancer
talk so I tried to keep it at a minimum, despite how large a part in my life it was playing at the time.
My fiancé and I lived with my family for the days surrounding treatment every 2 weeks. My church
community was always loving and supportive through everything. I also had a few great girl friends who would come over and spend time with me when I wasn’t feeling well. They would have dinner with my fiancé and me sometimes and then stay and do the dishes. My fiancé had two fantastic roommates who are still two of my closest friends as well. The four of us shaved our heads all together one night when I noticed that my hair was starting to fall out. We made a whole spectacle of it and took before, during, and after pictures. I also emailed a bit with the friend of a friend who had gone through treatments a few years earlier for Hodgkin’s Lymphoma. It was nice to hear a little about what was going to happen. I saw a therapist once my treatments began. Sorting out my feelings about my mother’s death and my own illness, and my responsibility to my family, took some time and energy. I looked into support groups by my area didn’t offer a lot for survivors in my age group (unless you had breast cancer...which I did not).

E: What (if any) additional outlets could you have used/turned to that you do not feel you had at the time?
M: I could have really used a support group to attend every week. Having a posse of people my age
who knew what I was going through would have been so helpful. I felt very isolated having few people who actually understood what I was going through to talk to. I also had a lot of trouble transitioning to my slower pace of life during treatments. I stopped working for last few months of my treatments and it took a while to teach myself how to be entertained. Lacuna Loft was dreamed up out of these experiences.

E: Whose idea was Lacuna Loft?
M: Lacuna Loft came about during a visit to Seattle to see my husband during the summer of 2013.
We were spending the summer apart; I was living in Huntsville, AL and working with NASA while he was living in Seattle, WA and working with Microsoft Research. We normally live in Champaign, IL and had about a year and a half to be there before my husband finished his PhD. I had decided to leave graduate school after that summer, and spend the time we had left in Champaign doing something totally different. While brainstorming out loud together, Lacuna Loft was born. It combines my love of writing and blogging with my passion to help young adults going through crisis sort through their new life. I experienced barriers at work due to my mother’s illness and during my own, as well as barriers on a personal level. It was my dream that Lacuna Loft help others learn what I had had to painfully teach myself.

E: Where did the name come from?
M: A lacuna is found in the dictionary as a “gap or missing part; a hiatus.” I hoped that Lacuna Loft
would become a place where young adults could come and learn how to fill in that gap or missing part; where they would want to stay awhile and recuperate.

E: Why was/is this endeavor so important to you and other young adults touched by disease?
M: As a young adult, learning how to slow down and face this horrible new reality that cancer or long
term illness brings about is a non-trivial activity (it is hard to do!). I went from a busy graduate student, marathon runner, engaged woman planning a wedding, to a cancer patient dealing with her own illness and the loss of her mother. I had no idea how to even entertain myself when not feeling well, let alone be ok with taking on less responsibility at work and standing up for myself when this occurred. It was time for someone to create a resource that wasn’t just about the medical drugs and side effects and treatment regimes. A resource that also dealt with the rest of the 24 hours in your day, spent trying to live this new life. A resource that dealt with self-care from the perspective of the young adults living through these crises. A resource that helped a young adult adapt their hectic, young adult lifestyle to one more suitable for recovery and renewal.

E: Where are you now in your journey with Cancer?
M: I am currently almost 3 years cancer free (as of July). I am still actively navigating what it means to be a survivor and I continue to have scans every 6 months for the clinical trial that I was in.

E: What "words of wisdom" and/or advice would you give any young adult facing Cancer or another life-threatening illness?
M: Be nice to yourself. Just like all things, what you are going through will change you. Having said
that, it is also important to remember that you will continue to evolve as time goes by. If you feel like
a sloth sometimes during treatment, it does not mean that you will live your life forever feeling like a
sloth! Motivation, energy, and a new sense of self will all return in time.


Please visit Mallory's site: http://lacunaloft.com/.

Say NO To CheMO.

It's been quite the rollercoaster ride since I wrote last. To cut to the chase, the news could be a lot better.

I have been told since I started going to Sloan that chemo was basically a last option kind of treatment since it wasn't really known to make too much of a difference. "Chemo" is what I was told at my last appointment.

It's funny; I always seem to know my results before I hear them. In the few days after my last round of scans (which were on June 20th), I started to get that all too familiar bad feeling. I've tried to ignore this feeling from Hell in the past but it always seems to be correct so it's becoming harder and harder to push aside.

I had emailed my oncologist over the weekend to ask her if it was at all possible to call me prior to my appointment with her mid-morning of Monday, June 23rd - if the news was good. At least it would save a trip into NY. The phone rang while we were on our way there and my mom handed it to me, clearly thinking my doctor would have good news since she called. Wrong!

The long and the short of it is that two of the four lung masses (one in each lung) have grown, plus there is a new mass in my right kidney as well as one in my pancreas. Needless to say, the rest of the ride into the city was a somber one.

Because there are multiple spots which my hormone therapy is no longer keeping at bay as well as new masses, my doctor said now was the time for chemo.

Chemo. The word every person with Cancer tries to avoid for as long as possible.

She told me she would probably want to start me on a combo of Gemzar and Docetaxel, but since I was so distraught over the whole thing, she told me she would be ok with just starting me on Gemzar. I had a lot to absorb and went home emotionally drained. I felt as if I had no options. This was how it had to be and I had no choice.

In the days that followed, I attempted to mentally and physically prepare for what was to come on July 9th (my scheduled 1st day of chemo). I dyed my hair back to it's natural color (something that I probably haven't been since I was around 10 years old) and absolutely loathed every second of it.

I tried to emotionally wrap my head around what was quickly approaching...but I just couldn't.

I, like so many others, have mostly vanity to blame for my reasoning behind not wanting chemo. However, there are significant other reasons as well. I do not want to pollute my otherwise healthy body (aside from the Big C, obvi) with a shitton of toxins. I don't want to physically feel sick. I don't want to be miserable for an undetermined amount of time only to have it not work. And lastly, I legitimately cannot mentally handle it. I want chemo to be my absolute LAST option. And even then...I am frightened that I will be "living" whatever time I have left in total torture.

My family and I have been discussing the option of an alternative treatment (something all natural) in other countries. I think I want to try this route before resorting to chemo. My mother found some treatment centers that focus on an entirely different lifestyle then what I am used to. A drastic change in diet, mental health, oxygen therapy, and many other things will encompass this alternative treatment.

It was getting to a point where I so desperately DIDN'T want chemo, that I was strongly considering not doing anything at all and just waiting to see what happened. I know that this is not the right choice for me right now.

I even got a second opinion from an oncologist at Johns Hopkins whom within the hour + meeting with, I grew extremely fond of. She said since the combination of the two types of chemo is so standard, I could really go anywhere to get it (closer to home) and she would be happy to be my point-of-contact doctor. But she also stated that I would remain bald for an indefinite amount of time (until they determined the chemo was no longer working...but as long as it was at least keeping the tumors unchanged, I would remain on the strict regimen...which would mean there would be no end to my misery unless my tumors disappeared or got worse), I would be sick, weak and extremely susceptible to disease due to my lack of an immune system.

Who wants to "live" like that??? I DON'T.

The problem with alternative methods of treatments are that our lovely healthcare system does not agree that they work and therefore, will not cover them. Although I am lucky and happy to receive a Disability check every month, I am also struggling to make ends meet with the amount I am given in general. There is NO way I, along with my parents, would be able to afford paying the massive bill for something like this. So not only do I feel helpless, now I have the added pleasure of feeling almost ashamed since I will most likely have to have some sort of fundraiser(s) to pay for whatever treatment I decide on.

Isn't having Cancer just the bees knees?!

I am still going to Sloan on the 9th because I also have a scheduled appointment to speak with the Ablation doctor that I spoke with a few years back. We figured that perhaps, if I was still a candidate, maybe it would be a good idea to burn one or more of the tumors before I even start any sort of treatment - just to get as much of a clean palate as possible.

There's SO much to decide and think about but honestly all I want to do is forget that I even have this stupid disease! On the plus side, my vagina is doing well...in case you wanted to know.

Three Little...Dildo's?

DISCLAIMER: Not to be read if you are faint of heart, prudish, embarrass easily.

It's been 5 weeks (today) since Radiation has ended. I have legitimately been thanking my "lucky" stars that this nightmare has finally come to a close. My vag has basically completely healed (Hallelujah) and aside from the few weeks of looking (and feeling...ohhhhh the itching...) as if I contracted the Herp, it's been a hell of a lot easier then when I was actually going through treatment.

My most recent CT/PET's came out fine - there was no new disease and no change in existing lung masses. For the next few months until my next round of scans, I can hopefully try to live as happily and distant from this stupid fucking disease as possible.

I am now able to be with my boyfriend full time. I have been able to help out with our new house as much as possible (although I'm waiting for the fun parts like decorating...). I have been taking walks around our new and incredibly scenic and relaxing neighborhood, which has included the befriending of some fuzzy characters down the street:

 

All in all, I think things are moving in a much more positive direction. Everything except for my new and arguably unimproved vagina. To be blunt, I have the vag of a 12 year old again. Nothing is getting in that thing - especially not my boyfriend.

Radiation apparently tightens and shrinks your vag canal as well as causes scar tissue to form up in there. In order for you to be able to stretch yourself out again, you get the pleasure of having your doctor and nurses give you a "dilator" (or 3). It's a hard, plastic dildo. I refuse to call it a "dilator".

Due to privacy and shame no longer being words used in my vocabulary, I asked for all three sizes. You have to start somewhere, right?

My doctor came back with a nicely packaged bag with these guys in there:

They look harmless until you take them out and notice the size differences.

I think it'll take quite some time to increase from small to medium to large. In the meantime, lucky me gets to use this for at least 10 minutes every day until I can somewhat feel like myself again. You even get an instructional manual of sorts to explain "Home Care Instructions for the Insertion and Care of Your Vaginal Dilator".

Really.

Honestly, it's a damn good thing I've always been so vocally open and willing to talk about sex and poop and foreplay and embarrassing life stories and everything else under the sun. I can't even imagine living in this world I've come to know as my own if I wasn't so blasé about everything.

With that, I'll leave you with an embarrassing story that I can now laugh about (that doesn't include my vagina - for once) and wish it were only still things like this that I had to go through.

A few years back my mother and I took a lovely trip to Greece for two weeks. On one of the islands we had some free time and decided to get up early and hit the beach. Of course, Europeans are quite comfortable with strutting around topless and in banana hammocks. Because I loathe tan lines, I bravely exclaimed to my mom that I was going to go topless. We chose an umbrella covered spot with two chairs waaay down the beach where not a soul was in sight and I disrobed.

After a few minutes I decided that this was actually quite freeing in a way and I was excited that my tan would extend past the restraints of my bathing suit top. I closed my eyes and started to feel comfortable with my decision to let The Girls go rogue...until I was startled not two moments later when an old Greek man was hovering over me smiling, stating in his broken English that he had left his sunglasses under that very umbrella the day before. Horrified and grabbing my boobs I looked up. Low and behold a pair of sunglasses hung from the peak under the umbrella. Out of all the umbrella's on that beach, those sunglasses were hanging from mine. This is my life, people. I should probably just accept it by now.

Donut's Aren't Just For Eating.

If it was socially acceptable to post pictures of your own vagina for the world to see - at this stage of the game I might, if only just to see the reaction on people's faces.

I have been going for Radiation Treatment 5 days a week for 6 weeks now. I'll just let you conjure up some sort of visual as to what a vagina/ass might look and feel like after having Radiation beams localized on one tiny, sensitive, recently operated on area. Now take that visual and multiply it by approximately 8 times more then what you thought and you might get a small inkling as to how I look and feel.

It's been way worse then I expected.

I started treatment on Tuesday, December 10th, 2013. Luckily for me, Sloan was able to recommend a Radiologist at a local hospital which makes my life a WHOLE lot easier then trekking to/from either of Sloan's locations. The nurses and my doctor have been extremely pleasant and helpful and to my extreme surprise and relief, I am usually in and out of there in less then a half hour. The treatment itself only takes about 10-15 minutes total. Plus, my new doctor (after consulting with my team of existing doctor's) decided that he was only going to treat the localized area instead of my entire pelvic region. This was supposed to make more sense in case later down the road I needed additional treatment, plus help to decrease any extra side effects that I really didn't need to go through.

Every day I get to strip from the waist down, put on a lovely hospital gown, hop up on a cold table, lay spread eagle in a mold of my legs and ass cheeks with a dilator (fancy medical term for dildo) shoved up my vag and have the techs line me up like escaped addicts out of rehab before a 2 minute CT Scan and then 6.5 minutes of treatment.

A few days before treatment began I had to come in to sit for a mold as well as get tattooed. The "tattoo's" are 4 tiny black dots that basically act as a compass to line me up on the machine. But they're there forever. Sometimes I look at myself in the mirror and think they're a speck of dirt or an ingrown hair. There are two on my stomach and two on my hips. They're new "beauty marks" that I never wanted.

The mold I mentioned looked like a flat garbage bag laying spread out on a table the first time I saw it. Once laying on it, I had to sit spread eagle for about 10 minutes while the sides of the garbage bag were taped to my legs, forming a mold once it hardened. If you ever wondered what a garbage bag mold of butt cheeks and legs looks like, I give you mine, for your viewing pleasure:

The first few weeks I found myself to have the energy of a 92 year old. I was out of my bed a total of 4 hours per day and that was only to drag myself out of the house for treatment. I'm still constantly tired with no energy but it's become a little more manageable.

After about two weeks, I started noticing this burning everyone was referring to. After 3 weeks I became way too familiar with it and after 4 weeks I began counting the days until the torture would end.

The best way I can describe it is by saying it's as if I had a chemical peel. The skin all around down there (like, the whoooole area down there...) has been repeatedly burned so much that the first few layers have been completely singed off. This has lead to open sores in all sorts of areas and holes one would never want open sores in. The pain around my surgical area has become so great that I am back on pain meds just to be able to get through the day. I think I have used my damn donut pillow more for treatment then my three vag surgeries combined. And if I'm not in pain, I'm just flat out uncomfortable. Picture the crispiness and dry skin and itching and slight swelling and downright punishment that comes along with a sunburn. Now picture that sunburn in and around your unmentionables. And there's nothing to do for it but inhale pain meds and glop on Aquaphor to the point that it's oozing out the sides of your underwear. Basically, in a nutshell, I have been miserable.

On top of everything else, I most likely won't even know if this has worked until I either do or don't wind up with another tumor down there. I just keep thinking to myself that if a full blown tumor didn't show up on my last set of scans then there's no way it's going to detect anything super small down there. The fact that this last vaginal tumor didn't show at all makes me really question what the fuck the purpose of the stupid CT/PET Scan machine actually is. But I'll save that rant an' rave for another time.

Aside from all the physical pain and torment I've been enduring, my mental agony has - I thought - somewhat gotten better. I haven't been blowing through tissue boxes (cue lame-punch-line-drum-solo-sound-effect) full of tears and snot like I was doing not too long ago...so that's good, right? Welp, I guess my body wanted to remind me that the joke's on me because around 3am the night of the 15th (or morning of the 16th if you want to be technical) I kid you not, I was preparing to die of a heart attack.

I'm not sure what it is but the last week or so I have been having difficulty sleeping. I've been taking pain killers as needed throughout the day but hadn't taken any a few hours before I tried going to bed that night. As usual, I couldn't sleep so around 2:45am or so I took a dose of ZzzQuil. As I was laying down in my bed, my heart started beating so fast and hard I could see it popping out of my chest. I started to feel dizzy and sick and it was as if my chest was being compressed and squeezed. I tried to take some calming deep breaths but this was unlike anything I had ever experienced. I was trying to chalk it up to anxiety but I've had sooo many bouts with damn panic attacks that I knew this was different. Plus, I was afraid to take any Xanax being that I had taken pain killers during the day and had just taken the sleep aid.

After a few minutes of pacing around in my room, trying to slow my breath and crazy claustrophobic feelings, my heart rate started to relax a bit. Of course, at that point I was freaked out and did the worst thing I could - I Google'd it. Everything was telling me I had just had a heart attack.

I ran to the hall closet and chewed on an aspirin. As I was sitting back down on my bed, another attack started to take hold. I opened my dad's door and told him I needed to go to the hospital. One minute later I legitimately thought I was dying and told him to call 911. The first thing that came into my head was, Greeeeaaat...you survived Cancer but died because of a fucking heart attack...!

After way too much time passed to be living so close to a hospital, about 5 paramedics and a cop showed up. I wasn't dying. In fact, my heart is great. I apparently had a major anxiety attack. According to my dad, my mom used to have them like this when she was younger as well, and had a few experiences where she called 911 because she thought the same thing I did.

Wonderful! Just what I need. To make things even better, I wasn't even feeling any anxiety at all before the attack hit. Needless to say, that was definitely not a fun feeling. I swear, there is never a damn dull moment!

To look on the bright side, I have only 6 treatments left. Hooray!!! Monday, January 27th, 2014 I will be done with Radiation and I could NOT be happier about it. My next Lupron injection is coming up on the 23rd followed by a surgery follow up appointment with my vag surgeon, my next set of CT/PET Scans and an appointment with my Oncologist. Hopefully, by mid February I will be running for the hills from any kind of doctor, treatment or test known to man.

I turned 29 on December 17th. It's hard to believe how young I felt at 23 when I was first diagnosed and how no matter how much time goes by living through this awful nightmare of a disease, it never gets any easier.

In the spirit of the new year I decided that perhaps I should really make a conscious effort when selecting my New Year's Resolution. I wanted it to be something I needed to do for myself to make this journey a little more bearable. I committed to this: to live each day with new eyes. I'm working on it. Hopefully by 2015, I will be a pro.

Recovery from Vag Surgery #3.5

I can honestly say that even my left lung surgery wasn't this tedious nor was it so annoying. With no exaggeration, every single time I find myself having to use the toilet, I also have to step into the tub and hose myself off like some sort of farm animal.

News flash: I pee. A LOT.

And it's not only the frequent shower visits. It's the constant changing of the gauze (I envision tiny red uniforms and black fuzzy hats on my gauze squares when I say this phrase...although this is not the royal treatment I was looking for...). I guess this wouldn't be SO super bad if it didn't just remind me of my defective vagina 100 times a day. Every time I have to hold a mirror down there in order to see how the placement of gauze is lined up, the emphasis on my non-working lady part is refreshed and I'm brought back down to this gloomy place.

I will say, however, that the last week has brought a lot of healing to the area and the once vast void that was the unwanted hole in my private area has closed a great deal. It is still very uncomfortable to sit and I am still tormented with the idea that cosmetically I'm going to look different coming out of this, but I am starting to see the light at the end of THIS tunnel, at the very least.

The next chapter of my struggle will be my trip down Radiation Road. I'm definitely not looking forward to it. It's not even the fatigue or metal mouth or whatever else accompanies this type of treatment. It's the emotional battle of the even more severe sexual side effects - as if I don't have enough.

For a soon-to-be 29 year old woman with a boyfriend she finds extremely attractive, it's hard to feel as though I've already lost my sexual spark. It's fucking scary to read up on this type of radiation and realize that your vag can legit change it's form. You're basically sent home with this dildo-type thing to stretch yourself out since you basically tighten up to the point where you'll be in pain if you don't. Not to mention the added dryness and irritation. Great. However, The American Cancer Society's site has an interesting take on it: One way to do this is to have vaginal intercourse at least 3 to 4 times a week. Clearly, this was music to my boyfriend's ears (and mine).

I still don't know when my treatment will begin and obviously I won't know about any side effects until I'm going through it. I'm keeping my fingers crossed that they will be minimal and hopefully after 5 and 1/2 weeks of it I'll be able to claim Cancer Free status for real-zies (unlike last time).

The Abyss...

The last 24 hours have been way too intense for me. The "Abyss" I'm referring to isn't some realm of outer space nor is it that movie from the 80's...it's my fucking VAG.

- I would suggest reading the following at your own risk. I will not take responsibility for any vomiting or bouts of nausea. -

Late last week I sneezed and felt a sharp pain/pop "down there". I didn't really think to check myself until the following day when I nearly dropped my stupid little compact mirror that I was holding between my legs - I had two HOLES at either end of my incision. I'm talking legit HOLES. My stitches had busted open.

After regaining my mobile functions and no longer hovering over the toilet dry heaving, I frantically called my mother and had her rush over to judge for herself if I looked as horrific as I thought I did. Obviously, something wasn't right and we called the doctor. Of course, we couldn't move up my appointment as much as we wanted to so I had to wait out the weekend/early following week until yesterday, 10/23/13.

I was dreading this appointment. I knew I couldn't stay like that - especially since the holes were barely hanging together by a tiny ass thread of skin. GROSS. I figured my doctor was going to stitch me back together right then and there and I was sooo not looking forward to that. But alas. Silly me actually thought that that would be the worst option. HA! Boy was I fucking wrong.

Rather then be stitched back together, I was instead cut the fuck open. Now, rather then having two smaller holes, I have one giant ass fucking GAPING abyss of a hole where my tumor was. I can't even begin to explain how horribly frightening that/this whole experience was/is.

Of course, now that my hormones are constantly on the warpath, I was already on the verge of a meltdown. Once I was told that a numbing needle was going to be jabbed into the incision area, the rest of the skin was going to be CUT away and the inside of the hole SCRAPED OUT...I was a complete disaster. I mean, is this real life??? Or rather, is this really MY life...?????

Once all the stabbing and snipping and scraping was done, the hole was flushed out with water or saline or whatever the fuck it was, and then a giant wad of gauze was shoved into the hole. Umm...

THEN I was told that every single time I peed, I would need to take out the gauze, flush out the hole with warm water and then fill the hole with new gauze. EVERY SINGLE TIME I PEED.

If I was to describe the size of my bladder I would probably compare it to half of an unshelled peanut. I pee 73 times a day. This was going to be a nightmare.

Aside from not ever wanting to see what this thing looked like, I had the added bonus of being told it would take at least another month to heal. On top of that, I was informed last week that my doctors decided that localized Radiation would be my next course of treatment. In pure Cancer fuckbag fashion, you never know anything until you meet with these doctor's. So basically, I won't know a damn thing about the Radiation until I meet with my now 5th Sloan doctor on 10/29. What I do know is that I won't be able to start Radiation until this thing heals. What I also know is that it will probably complicate my issues down there (sexually, physically, etc.) even more then what I already have to deal with. I can't even take it. That's a whole separate discussion that I definitely won't go into now.

Anyway, after I arrived home after a car ride full of crying and emotional breaking down, I obviously had to pee. This is probably the worse thing I've ever had to do following my battles with this disease...and I've had to do and see enough for a lifetime as it is already.

Having to stick gauze up into a serious open hole in your freakin' VAGINA that's not supposed to be there would make the faint of heart drop dead. And not only do I get the pleasure of having to do this at all, but I have to do it 100 times a fucking day!!! PLUS I have to continue doing this until it heals!

If I didn't throw my hands up in pure disbelief that this is actually the life I have to live I'd probably be strangling myself with them! It just gets "better" and "better".

A full 24 hours have gone by since the whole ordeal went down and every single time I have to change out the gauze I feel sick. It is not a comforting sight to see. Basically, the wound has to heal from the inside, out. How freakin' weird is that? The saline'd gauze apparently helps it heal correctly and reduces the risk of it looking deformed. Clearly, I'm still going to wind up with some sort of concaved area down there. There's no way in hell a hole this size is just going to magically close without any type of defect. The whole thing is just a complete nightmare.

Even if I could live with the hole, and the flushing it out after every urination, and the changing of the gauze, and the deformed vag I'm going to wind up with, and the fact that I now need some dildo-esque Radiation thingamagig therapy...what I do not want to live with is the overwhelming sense of being stuck. Now I'm stuck here, barely being able to move and walk around the house, let alone venture out into the wilderness for who knows how freaking long...on top of not being able to roll around in the sheets for an undetermined amount of time. Translating into what will seem like a goddamn eternity.

Aside from AAALLLLLLL of that, my boyfriend and I have been building a house in West Virginia and I'm missing all of it. This whole thing couldn't have come at a worse time. He has to be there to work on the house so I will hardly get to see him and I won't be able to see my first house being built and obviously won't be able to help build it. The whole thing just sucks SO bad.

Even after 5 years (almost to the day of my first vag surgery at Sloan 5 years ago - 10/14/08 and now 10/8/13...ha...) I cannot get used to or even ever seem to wrap my head around the fact that this is my life. It's just ridiculous! I'm either going to wind up barreling down the road of insanity or something is going to have to give. I guess for now the only thing that's going to give is myself, giving myself new wads of gauze every half hour...for the next month...grreeeaaaattt...

It Was Nice to be Cancer Free...

...in my mind, at least.

Today marks one week since my latest surgery on October 8th. Lucky me, on September 17th, 2013 I found another hard mass while I was checking myself in the shower. It was back in my freakin vag. UNFUCKINGREAL.

So, I went through the I-wanna-stab-myself-in-the-face-with-a-fork process of tests and doctor appointments and probing and prodding and all that jazz. My tests were September 24th. When we didn't hear from my oncologist, we figured the news wasn't great but my mom called her on 9/25 anyway just to check, we received amazing news. She stated that I showed no sign of disease anywhere...including my lungs. There was just a note as to where scar tissue appeared due to prior surgery.

This. Was. A. Mazing.

My mom called me crying and said there was nothing on my scans. It was a great feeling. But I still had an appointment with my original Sloan doctor on 9/26 just to check what the mass was. Obviously, he felt something and informed that this would be an easy surgery, that it was only about the size of a pea and could be removed in 10 minutes or so. We asked why there was something there when my scans came back clear. He stated that since the vag has a lot of folds and whatnot, that it's hard to tell if anything is there. Great. I was then scheduled for my third (to date) vaginal surgery on Tues, 10/8.

Surgery came and went and luckily I was scheduled to be at the hospital at 8:15am, so at least it wasn't a super late procedure and I was able to leave that evening. Since then, I have been going through my usual recovery process. Since this tumor was more on the outside rather then the inside, the week since surgery has been slightly different then my first two vag surgeries. For instance, I can see the area that was operated on this time...and let me tell you, it kind of freaked me out for a solid 5 days or so because the swelling was so crazy.

My next appointment was scheduled for 10/30 with my vag surgeon and 10/31 with my oncologist to discuss possibly trying localized radiation. I was expecting my pathology report to come back positive as LMS but to have clean margins. This would mean that I was technically, Cancer Free.

It was hard for me to accept that I was Cancer Free because I'm always waiting for the other shoe to drop and something happen. But at the same time, I definitely felt some sort of relief just knowing that there weren't any masses in my body. It was a good feeling.

Today, my parents informed me that my pathology reports came back, and my margins tested positive for Cancer cells.

I still have Cancer.

Being that I have never had this happen in the 5+ years since I was diagnosed, it is a scary thing. My doctor removed the area he could in order to not deform me. If I had to have another surgery, I would absolutely be deformed and disfigured - and that could legit mean a million things. Great.

They won't have an answer as to what they plan on doing this time until Thursday when they have their weekly meeting with all the doctors. I won't know anything for another two or more days. That's always fun - waiting. My doctor stated that he wasn't leaning towards another surgery so who knows what it's going to be. Radiation, chemo, who knows anymore.

Naturally, I feel like when it comes to my health, I am always waiting for something to happen...because now it just seems like something always does happen. It blows. Trying to be positive when all that seems to keep happening are crappy things is super difficult. I guess all I can do is take it one day at a time and just try to live in the moment. It's not easy.

5 Years and 1 Day.

Yesterday, September 8th, 2013 marked my 5 Year "Anniversary"- if you will - with Cancer. The same set of emotions accompany me on this day every year. The first is, of course, Sadness. Sad that my life is a never ending cycle of tests and let-downs and struggles and my own personal Hell. This is followed by Relief. Relief that I'm still alive and healthy, to some sort of extent. Next comes the blanket of Anxiety that seems to frequent me way too often these days. The Anxious feelings weave their way in and out of all the other emotions that run their course throughout the day. Then comes the wave of Strength/Accomplishment. I try to hold onto this pair as best and long as I can, although this year it seemed almost impossible. I know I am proud of everything I've been able to overcome and withstand up until this point but Strength seems to be somewhat elusive nowadays. Finally, there's Fear. Fear of the unknown and even Fear of what I already know.

It's hard to explain how it is for me lately. Simple things I would normally be able to let roll off my shoulders aren't easy to do anymore. Ordinary, basic tasks overwhelm me and are extremely difficult for me to deal with at times. Something as foolish as getting lost or an appointment getting messed up or not being comfortable in my surroundings seems to set me off and I spiral out of control. And the worst part is that not everyone understands. I guess I can't expect people to get it. For the most part even I know I'm being unreasonable and a bit crazy. I just can't help it.

I started therapy again about a month ago and it helps to address certain issues to an unbiased ear. Of course, it hasn't really "fixed" me at all. It scares me to go through these crazy corkscrew twists and turns of emotions and not be able to control them. Especially since during these times I feel very alone...which hasn't always bothered me but now it's starting to.

I have been trying my best to get back into the take-one-day-at-a-time approach but again, everything just feels so overwhelming as of late that my mind seems to never shut the fuck up. One thing I did decide to do for myself which started today was a class in Equine and Canine Massage. People say animals are an incredible source of stress relief because they can sense your feelings and emotions. I am one of those people, and always have been. Even just today on my first day, I felt better. I'm hoping this outlet will be one I can continue to use.

As for me, now I begin my countdown to the next year with this fucking disease. Hopefully I will be able to look back as I'm reflecting on my 5th year as the most positive one yet. I guess I will find out when I'm seated in front of my computer in another 364 days.

A Positive Story in a Negative World.

It's been a few months since I've written last and perhaps it's because I haven't had the most positive mental status lately. The past few months have been a downward spiral when referring to the side effects I've been having due to my meds. My emotions have taken hold of me to the extreme that there are times I can barely control them. My anxiety is out of control. The littlest things can set me off into this whirlwind of highs and lows and it might take a full day before I can actually step back and see myself being a complete bitch or basket case or psycho or whatever it is I'm being that moment in time.

Aside from losing myself in these moments of tornado-esque emotional battles, I have also been (steadily) losing my libido. Talk about anxiety. It's not easy when you're (a young) 28 and in a relationship with someone you love and you would rather just watch TV until you're tired rather then tucker yourself out rolling around between the sheets. That, coupled with some other woman-y issues, would cause any chick of sound mind to go nuts. Pair those things with the fact that I can see myself going batty as it is and you will get the most recent months of my life that I've been dealing with.

As the days go by, the more I feel like I'm sinking deeper into this crappy hole I've somehow become all too familiar with...and I hate it. I know I'm not making it easy on the people in my life that I love the most. Dealing with me on a good day is probably a bit of work - I can't even imagine dealing with me on one of my loony ones.

About two weeks ago, I was (as usual) falling into one of these emotional sink-holes when I was blankly surfing around on Facebook. I came across the page of a dear friend of mine who tragically lost her brother one year ago. I read her post and couldn't help but be reminded of the small miracles Life can present during the most unbearable of times. It's happenings like this that bring you back from your personal Pity-Party Hell and jog your memory of why Life is so amazing to begin with.

There are so many times I wonder to myself how heartbreaking events can happen to the lives of people who do not deserve them. Last year, the younger brother of a wonderful woman I know lost his life way too soon. He passed away in his bed at his parents house.

In their family, it is believed that moths are the spirits of lost loved ones. A day after my friend and her family buried this young man, friends and family were gathering at her parents house. There, a black and white (his favorite colors) moth landed on the handle of a door and then proceeded to fly into the house. The next morning her father was in her brother's room and turned around to find the moth in the middle of his son's pillow - the same place he passed away.

It remained there for the following 12 hours and allowed family members to touch and handle it. After that it flew away, but not before renewing the family's belief that their brother/son/uncle/loved one was still with them.

One year later, something most people would believe to be nothing short of a miracle occurred to the same family. As friends and family gathered on the evening of the anniversary of my friend's brother, a black and white moth landed a few feet away from a memorial garden planted for him. The moth proceeded to land on various members of the family including his father and my friend. It was getting late so she wound up driving home with the moth still attached to her dress. She wound up hanging the dress on a hanger and went to sleep - only to wake up periodically during the night to find the moth still on her dress.

The following morning she awoke to find the moth not on her dress, but on her bed. The moth stayed with her for two days, allowing her and family members to pet and hold it. How amazing.

Some may find this occurrence to be simply coincidental. I find this story to be truly uplifting and remarkable. How incredible a seemingly small and normally trivial event can really be when your heart and mind are open. This story amazes me each time I think about it. It restores my positivity when it seems like there is mostly only negativity surrounding me.

I have been trying to hold onto this when I feel myself starting to slip into my coma of pessimism. It is stories like this that remind me that miracles do exist. We just need to believe in them.