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.