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.