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.